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Dementia Care Guide Helping you look after a loved one with dementia

It’s good to be home

If you’re that friend or family member, and someone you love has dementia, then our Dementia Care Guide is meant for you.

It contains everything we could think of to

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For every person living with dementia, there’s a friend or family member struggling alongside them. Someone doing their best to put their loved one at ease. To help them cope with all the changes in their life, and all the worry and confusion those changes bring.

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help you look after your loved one, including valuable insights, resources and advice.

Dementia can be a challenging condition, but it’s important to know you’re not alone.

At Bluebird Care, we’re here to support you.

To help you give your loved one the greatest chance to live a full and meaningful life in the place they feel best.

Their own home.

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Understanding dementia

Contents 05_ You’re in good company

16_ Dementia Care Pathway

20_ Information, practical hints & tips

06_ What you need to know about dementia

18_ You don’t have to walk this journey alone

21_ Nutrition & hydration 22_ Mouth care 23_ Distractions at mealtime 24_Dental hygiene 27_ Utensils, chewing & choking 28_ Tips to promote good hydration 30_Medications 33_ Alcohol 34_ Safe driving with dementia

07_Is it dementia?

09_ Early signs of dementia 10_ How different people respond to dementia 12_ Dementia care do’s & don’ts 15_ A positive approach to care

36_ How dementia affects vision 37_ Eyesight 39_Hearing 40_ Incontinence 42_ Keeping warm 46_Falls 47_Sleep problems 48_Sleep 50_Smoking 52_Physical activity 54_ Pets, hobbies & interests

56_Pain 58_Mood 60_Behaviour 62_ Repetitive behaviours 63_ Agitation in people living with dementia 64_Personality changes 66_Wandering 68_ Independence & keeping safe 70_Relationships

72_ Communication with people with dementia 78_ Environment & safety in the home 84_ Customer tips: Art time 86_ Caring for yourself 88_ Caring for the carer 90_ About Bluebird Care 91_ Bluebird Care can help

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You’re in good company According to the Alzheimer’s Society, right now there are around 982,000 people living with age-related dementia in the UK. And around 700,000 unpaid carers.

It’s a huge challenge, and will only become more so as the population ages. Because when someone you love is diagnosed with dementia, it’s not only life-changing for them, it’s life-changing for you as well.

But if you know what to expect at each stage of dementia, then you can be in a better position to keep your loved ones safe and happy, and to keep yourself as calm as possible.

Dementia is complicated. It can affect your loved one’s senses, their memory and comprehension. It can cause anxiety, fear and even mistrust.

That’s what this Dementia Care Guide is for.

To offer you helpful insights, shed light on any issues that might come up and provide practical steps that will help you manage it all.

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What you need to know about dementia What dementia Dementia isn’t a specific disease. It’s more is…and isn’t of an umbrella term that the Alzheimer’s

Society describes as “a group of symptoms associated with a decline in memory or other cognitive skills severe enough to reduce a person’s ability to perform everyday activities”.

The specific disease that most people associate with dementia is Alzheimer’s disease. In fact, Alzheimer’s accounts for 60-80% of all dementia cases.

The second most common type of dementia

is vascular dementia. This happens when the vessels that supply blood to the brain narrow or become blocked. This can sometimes happen after a stroke.

There are other types of dementia that impair cognitive ability, but these are far less common.

Dementia is not exclusively linked to old age as people get dementia as early as 40 years of age.

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Is it dementia?

Regardless of age, we all have moments of forgetfulness at some points in our lives. So how can we be sure someone you care about possibly has signs of dementia.

It’s probably normal ageing

Its time to talk to a Health Professional

> They sometimes search for words

> It takes them a while to answer the phone

> It takes them longer than usual to complete tasks at work, though they still finish them

> They forget what they had for dinner last night, but remember when someone gives them a hint

> They use the wrong words- cooker instead of table for example

> They can’t find their car keys > They misplace their house keys from time to time > They drive slower than they used to > They lose their temper more easily

> They have trouble choosing what to eat at a restaurant, but ultimately make a choice > When they’re in a noisy environment, they need to focus more on their conversations

> They struggle to deliver their job role > They have trouble following a series of steps or instructions > They can’t remember how to drive and get lost in a familiar place > They can’t follow a conversation at all when there is background noise or other distractions

> They forget what they ate yesterday, and no reminder can help jog their memory > They have difficulty deciding what to eat, or what to wear, daily decisions become hard > Driving can be difficult, missing red stop signs and driving very slowly > Don’t acknowledge the telephone is ringing or the need to answer it

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“They’re so knowledgeable about staying well, I feel safe in their hands”

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Early signs of dementia When most people think of dementia, they think of memory loss. But there are other symptoms that signal someone could be in the early stages of dementia.

These > Issues with comprehension include: > People living with dementia struggle to remember words or find words

> Decline in ability to attend to hygiene > Forgetting day to day familiar tasks > Can’t find things e.g. keys, purses or wallet > Can get lost in a familiar place > Forget to take medication

> Anxious about things that they would not have been > Less sociable and can be irritable > Memory changes and repeating themselves > Decline in problem solving and planning their day > Forgetting up and coming events > May say what? (you think they are starting to have hearing problems) but they can’t process every third or fourth word in a conversation)

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How different people respond to dementia Unlike an upset stomach or a chest infection it is not always easy to recognise the early signs of dementia. It isn’t always easy to accept the changes that are happening.

Those people with signs of dementia tend fit into one of these categories:

01_Unaware Half of people with dementia have no idea they have it.

In fact, they don’t think anything’s wrong at all. So if you point out they’ve done something irrational or unsafe, they’ll likely get agitated or angry. For instance, they might miss a road sign and drive miles out of the way.

Once they realise that something’s up though, they’ll insist the sign wasn’t there, so that’s why they kept looking for it. They’re not lying. They just don’t realise anything’s amiss.

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02_Aware and Frightened Another 30% of people realise they’re losing their cognitive abilities and are scared by it.

They know their memory is faltering.

They cling to people they trust, nervous about upsetting or losing them. They search for skills they’ve lost. And they get upset when things don’t happen as promised. So if you tell them you’re going to do something at a certain time, make sure you do.

People living with dementia can be hard to live with and it is important to get other people to help.

03_Aware and Hiding The other 20% of people realise they’re losing their cognitive abilities, but don’t want anyone to know so they hide it. They might leave a bill out on the table to make sure they don’t forget to pay it, but as more items start piling up, fewer things get done. And they might choose to stay home or away from friends. That way, fewer people will suspect their health has declined.

Ultimately, whichever category your loved one finds themselves in, it’s important to know that people with dementia are simply responding to the symptoms of dementia.

So they need to be supported appropriately.

Three responses to dementia > 50% Unaware > 30% Aware and Frightened > 20% Aware and Hiding

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Dementia care do’s & don’ts

Living with dementia

Do > Be the calming constant for the person living with dementia

> Encourage drinking of water and other fluids to prevent dehydration

> Be present in the moment – talk about today

> Have a safe environment e.g. no loose rugs, inadequate lighting, cut of valve for the cooker

> Encourage conversation and laughter: it may be slow in coming but don’t give up > Use your hands when talking to show actions, because words may not be enough > Enjoy with them and encourage activities they have an interest in > Walk with them when they wander, they may be looking for the toilet or bedroom but can’t verbalise it > Offer choices but limit them to just two at a time > Help people get started with a task – because sometimes they forget how to start > Encourage friends and family to be around > Let others help and take a break

> Ensure the person can swallow without choking as choking can mean a deterioration and the customer needs a health review > Learn to say “I am sorry this is hard” but will de-escalate their anxieties when they get upset, its kinder and more respectful

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Don’t > Try to reorient your loved one to the present, if they’re in another time or place > Hesitate to take their car keys away, as it’s safer for them and they’d do the same if they were in your position > Expect your loved one to immediately follow your guidance, if you haven’t been giving them guidance before > Get frustrated with your loved one if they can’t do something today that they could do yesterday. Each day is different >C hange topics too quickly, as people with dementia can be slower to process things and therefore struggle to keep up >G et angry with your loved one if they swear or use inappropriate language.

They’re just trying to use the abilities they still have >A sk open-ended questions like ‘What do you want to drink?’.

Instead, include the answers in your question, such as ‘Would you like a hot or cold drink?’

> Don’t speak in ‘baby talk’ or highpitched tones, as it’ll just make them anxious. Instead, speak calmly using a deeper register of your voice > Feel guilty about stretching the truth in order to avoid a stressful or confusing situation for them > Argue about minor things. Try to understand what’s happening and let it go > Feel selfish if you need a bit of time for yourself, away from your loved one > Mistake dementia for stupidity. Your loved one isn’t stupid, they’re just living with dementia > Tell your loved one that someone they’re looking for is dead, as they’ll relive the grief each time. Instead, if they ask, ‘Where is my mother?’, respond by saying ‘Tell me about your mother’. That way they’ll have a chance to talk about how their mother made them feel > Be frustrated when people cannot complete an activity today that they could do yesterday; sometimes each day is different

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A positive approach to care Quality you can count on

Tailored to you

It’s not your fault

For over 20 years now, Bluebird Care has helped people with cognitive issues and other health conditions live at home, where they feel best. As the UK’s largest Home Care provider, we know what it takes to look after someone with dementia. And we know how to help their families too.

At the heart of our Home Care is the need to look after everything that makes someone who they are – not just part of them. That way we can help them live more meaningful lives. Based on this holistic approach, we’ll provide your loved one with care that meets their specific needs, at each stage of their illness.

Sometimes you might feel the need to apologise to your loved one for their dementia. Don’t. Because it won’t change their situation and it’s only likely to confuse them. Instead, channel that natural tendency to assume blame for something with a more empathetic response, such as:

Living with dementia, or looking after someone who is, can be really difficult. That’s why we take a holistic approach to our Home Care. One that nurtures the mind, body, spirit and family of the person we’re looking after. And that enables us to provide truly compassionate care that enriches their lives, and yours.

As their dementia progresses, we’ll aim to preserve their dignity and offer comfort in every way we can, all while showing real expertise, patience and compassion.

> I’m sorry you’re going through this. It’s hard

At Bluebird Care we are able to provide for each individual customer based on their needs throughout their journey of living with the illness.

> I’m sorry the bath made you feel cold. This is hard

> I’m sorry you’re upset with me right now. This is hard > I’m sorry today has been so difficult. This is hard

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Understanding dementia

Dementia Care Pathway The dementia pathway is predictable and if families are supported to understand the changes it can be easier to manage this very difficult life changing situation.

A dementia diagnoses has a major impact on the person living with dementia and all their wider family and friends. People living with dementia are best cared for in their usual environment. To enable families to manage and to be able to feel in control and manage the changing situation, families need to be helped along the pathway.

This will support and prevent any urgent change that then usually sees the person with dementia admitted

to hospital or a care home. Care at home with carers or live in care is not fully understood by families who have never previously needed help. Information, advice and support needs to be made available to discuss the options that could be in place at each stage of the dementia journey.

If this is done early in the pathway the person living with dementia can be involved and share their views and make their choices.

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You don’t have to walk this journey alone When someone is diagnosed with dementia it can feel as though the world around you is falling apart. It is also at a time when key decisions need to be made, and it can be frightening. You don’t have to face this journey alone Evidence suggests people with dementia can thrive easier in their own familiar environment with adjustments and support.

We will help you adapt the environment and put in simple methods to support your family on the journey.

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Information, practical hints & tips

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Nutrition & hydration As we age, the need for a balanced diet becomes more important. Ensuring adequate nutrition and hydration may be more difficult for those living with dementia.

There are several reasons that could lead to a deficit in nutrition and hydration for these individuals, but there are also helpful hints and possibilities to make nutrition and hydration an easier venture.

Tips to promote eating well

Appetite changes, taste & smell

> Use coloured plates to help distinguish the food from the plate (blue or red crockery)

> With all the sensory and cognitive changes, a person living with dementia experiences, you should expect that someone may experience changes in appetite and food preferences

> Provide regular small meals and snacks > Consider fortified foods – adding high calorie foods e.g., butter, full fat milk, yoghurt, bread. > Provide finger foods – easy to graze over the day > Consider peoples tastes, likes and dislikes > Consider culturally appropriate foods > Encourage the person to help with food preparation > Create an appetite – encourage activities and walking before meal > Promote appropriate sensory cues, smells of cooking food, sitting at a table, palatable and recognisable foods

> Foods they have loved for decades may now have a negative smell or taste. Don’t force these foods or argue over them. They may not remember that a certain food was a favourite and only know that it smells or tastes bad now > Offer a variety of balanced foods: vegetables, fruits, whole grains, low-fat dairy products and lean proteins

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Living with dementia

Mouth care Mouth Care is important to maintain a healthy mouth. An issue with an unhealthy mouth will lead to the person not being able to eat and drink the right amount of food and fluid. This can lead to the person having weight loss or through dehydration needing a hospital admission. Some things to look out for:-

> There may be pain related to eating for a person living with dementia. They may or may not be able to communicate this to you > Dentures that don’t fit well may cause difficulty with chewing and make it uncomfortable to eat > It is important to visit the dentist on a regular basis to ensure any issues with teeth and gums are addressed > Some people living with dementia will complain about sensitivity around the mouth area that makes it uncomfortable to eat or drink > Offer a warm cloth to wash and wipe the mouth area before eating > The mouth does become sensitive, and this is due to neurological changes > For some, brushing their teeth is beneficial before a meal. Offer this option as well as after eating

> Always test the food being served to ensure that the temperature is not too hot or too cold > Offer small servings at first until you understand new preferences and realise, they may change again. Offer no more than two choices at once. For example: Cold or hot to drink? Vegetables or fruit?

Too many choices will confuse and cause anxiety > Depending on the cognitive impairment of someone, they may not recognise the food or know what to do with it > You may need to demonstrate picking up the food and eating it. Sometimes, people living with dementia need help getting started on a task > A visual demonstration is best for understanding

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Distractions at mealtime > Offer a calm environment for mealtime; too much activity or interaction can be difficult for a person living with dementia to stay focused on eating the meal

> Give the person living with dementia plenty of time to eat. It may take over an hour for someone to eat the entire meal. It is important to give prompts that are encouraging

> Remove other objects from the table or food tray to have a clear space

> If possible, turn the television or radio off during the meal

> Sit with the person who is eating, even if you are not.

You don’t have to talk, but it may be calming to have someone nearby

> Encourage independence as far as possible by letting them finish their meal on their own, if they can do so safely

> If mealtime is more of a social event for family to gather, someone may enjoy it more and be more willing to eat and drink if in a familiar place with a family member > Arrange food on a plate that is a contrasting colour; otherwise, visual changes may cause the person living with dementia to have trouble seeing the difference between the food and the plate

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Living with dementia

Dental hygiene It is important to support people with dementia to keep good dental hygiene and well fitted dentures, if they are worn.

This will help to enable them to eat well, reduce infections (and therefore reduce confusion) and reduce pain.

It is evidence-based practice and therefore recommended that a person diagnosed with dementia who has their own natural teeth are seen by a dentist every six months.

Good care of the mouth and teeth is important. As the disease progresses,

people with dementia will need help with oral hygiene and cleaning their teeth and dentures.

It is evidenced people with dementia are more ‘at risk’ of developing tooth decay and gum disease, usually because they are unable to maintain good hygiene routines and will need reminding or helped.

People with dementia will find it difficult to express they have tooth ache or a sore mouth. They may express this in a different way, for example: behaviour, changes to sleep patterns or refusing to eat.

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Supporting information > Age UK – Keep Smiling > NHS England – Find a Dentist > Dementia UK – Mouth Care for people with Dementia Alzheimer’s Society – Dental Care and Oral Health

Tips to help >K eep a routine to washing, dressing and oral hygiene

> If the person has dentures clean twice per day and using denture cleaner and water

>A ttention to the mouth and teeth should be twice daily

> Problems to observe for include; bleeding gums, pain or signs of cavities/broken teeth or dentures

>H elp through reminding mouth care is needed, prompting and observing

> People who wear dentures should be encouraged to wear them as they will help with eating, improve appearance, self-esteem and speech and language

>G ive clear, short instructions and guidance > I n time the person with dementia will need full support with oral hygiene. A child’s toothbrush is recommended as it is easier to use. Simply describe the process you are going to take.

Support the person’s jaw

> Observe for behaviour changes that would be linked to mouth concerns > Increased restlessness, pulling of face and mouth, shouting

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Living with dementia

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Utensils, chewing & choking > There may be times when someone cannot recall how to use a utensil. You can visually demonstrate usage, and this may prompt them to use a spoon or fork. You may need to put the utensil in their hand > To ensure safety, you may want to offer meals cut into finger food sizes so that someone can feed themselves, either with a utensil or by hand. Do not be alarmed at the changes for the customer to want to use their hands > Promoting independence is vital, so eating with your hands should always be acceptable > If you have concerns about choking (sometimes referred to Dysphagia), discuss this with your GP or district nurse who can refer to a speech and language therapist for a swallow assessment.

Individual advice will be given on the food type and textures of food to help prevent choking and inhalation of food

> Avoid foods that require thorough chewing, as this may prove difficult for those living with dementia.

Some examples of foods that require thorough chewing are tough meats, steaks, pork chops and raw carrots > Pocketing portions of food in the sides of the mouth might occur if someone cannot get it all chewed up and swallowed. Check the customer mouth is empty at the end of the meal > Learn the Heimlich Manoeuvre in the event of choking

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Living with dementia

Tips to promote good hydration > Provide drinks, rather than ask if the individual would like one, ensure not too hot or too cold

> Supplement water and other drinks by providing high water content foods

> Encourage individuals to take each tablet of medication separately with fluid to maximize intake of fluid

> Leave glasses or jugs of water with easy reach

> Use a glass or brightly coloured cup to draw attention to the drink. Straws can help > Make drinking a social occasion. Have a cup of tea or ice lolly with the person > Leave reminders to drink – prompts by leaving notes out, or clear picture notices/words around the house > If a person is incontinent action needs to be taken.

Contact the health care team to get a continence assessment, investigations and continence products. Some simple changes can improve incontinence > Prompt fluid intake by having a drink along with someone. Modelling behaviour is a good way to encourage intake

> Lack of hydration is a big problem for those living with dementia. Encourage and offer liquids often > Sometimes, there is a fear of drinking water, typically related to a fear of choking. Use a dark coloured drinking cup and enhance plain water with a flavoured-powdered mixture > Use technology like Alexa, alarm prompts or a phone reminder > Offer hot or cold drinks, depending on the persons preference. You might find that someone prefers room temperature drinks instead of ice cold. With the mouth sensitivity, cold may be too uncomfortable for some people >U rinary tract infections are a big concern, so pushing fluids is important. Often people will be reluctant to drink enough fluid due to urgency and needing the toilet more often or incontinence issues

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>S omeone may not think of drinking during the day, so offer often and model drinking by demonstrating it for them > Offer foods that have a high-water content as well.

Some choices would be celery, berries, melons, cucumbers, apples, clear soups or broth

Problem food & drinks Certain foods may cause problems for someone, so if they are experiencing any issues, these could be the culprits: > Caffeine

> Fatty foods

> Grapefruit

> Salt

> Meats

> Sugar

> Cheese or milk

> Diet drinks

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Medications It is common for people with dementia to be prescribed other medications for other health conditions. Taking different medications at different times of day can cause confusion and mistakes.

There is not one solution that is perfect but trying different ways to improve safe administration is important.

Medication and how the person managing it needs to be monitored and reviewed as the evidence shows as the dementia illness progresses the person living with dementia will not be able to follow the reminders and will need full support in medication management.

A person with dementia may need reminding to take their medications at the right time.

Tips to help Checklist > A daily check list of the medications, which can be ticked off when taken, can be very helpful. They can often be provided by a pharmacist or GP. Having a picture of the checklist of each medication can help

Simple Steps > A pharmacist can review a person’s medications and work out the simplest and easiest way to take them all. This can help in making sure the packaging is easy to open and the instructions are simple to read

Reminders > Reminders such as alarms on the phone can help or smart phone apps and smart speakers e.g., setting up Alexa to prompt the person when medication is due and what medication is due

Pill box > The pharmacy can provide pre-packed medication which have different pictures for each day over the week. They can be useful but don’t always work for everyone > Note: Professional carer experts are not allowed to help a person take their medication if it has been put in a pill box by someone other than a pharmacist. If a care expert is involved a box packaging system needs to be used and to use medication administration record

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Timing of medication administration > Some medications are to be taken with meals; set them aside until after the meal so the medication struggle isn’t part of mealtime > Clear all evidence of the meal and then offer the medication > Sometimes, eliminating the issues with taking oral medications can relieve many of the eating and hydration issues > Utilising other medication types, such as liquid medication can be easier to swallow or, patches or inhaled medication may be helpful > Often, those living with dementia are suspicious or sceptical about medications given to them. They may develop mistrust of the person offering the medication and refuse to take it. If these medications are given at mealtime, the medication refusal may cause the meal to be refused as well > Ask your doctor or pharmacist if this is an option > New medications may alter or decrease appetite. Monitor them closely and notify a health professional if there is a significant change

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Living with dementia

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Alcohol It is important to balance the person living with dementia’s rights to enjoy pleasurable activity such as drinking alcohol, against the risk it may pose.

> Excessive alcohol consumption over a lengthy period can lead to brain damage and may increase the risk of developing dementia

Helpful tips to support people to reduce alcohol

> A person with dementia may drink too much alcohol as they have forgotten how much they have consumed

> Provide low alcohol or non-alcoholic substitutes

> Having a drink in company can be a pleasant way to relax. However: People with dementia can become more confused after a drink, so need to limit the amount that they have

> Keep alcohol out of sight and of reach > Provide watered down alcoholic drinks > Consider support for alcohol cessation services > Avoid drinking alcohol in front of the person with dementia

> Alcohol doesn’t mix well with certain medicines

Further information:

> People who have dementia secondary to alcohol abuse should not drink alcohol

> Alzheimer’s Society – Alcohol and Dementia UKAlcohol related brain damage and dementia

> People with alcoholic dementia should have high thiamine diets / and or thiamine supplements

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Safe driving with dementia Tips for carers & informal carers People with mild dementia may still drive if they are safe, although they must inform the DVLA once they have been diagnosed with dementia.

Questions to help a person living with dementia and their informal carer decide on safety are: > Would family members be happy for the person living with dementia to drive their grandchildren alone? > Have they had any accidents or near misses recently? > Have they got lost driving in a familiar area > Do they often not remember where they have parked their car?

Some objective tools to assess safety: > Black box tracking device > Consider a safe driving assessment ( some local councils provide this service )

When someone is considered unfit to drive this can be very difficult and life changing and can also be hard to accept.

The following actions need to be taken: > Inform the person they need to inform the DVLA, and they are not able to drive and help them with this difficult decision and process > Inform the family/ support the family in making the safe decisions > If possible, the family t could try to remove the car from the drive so that the person doesn’t get reminded that the car is there and possible forget they have a car and possibly agree to take the car keys

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Alternatives to driving that could help > Book taxis to go to the supermarkets and usual places > Set up an account with a taxi firm to order the taxi in advance. Using the same taxi company can be safe as the driver could be informed of the diagnosis and look out for the person and be aware what to do if the person seems mixed up more when they pick them up > In some areas – voluntary organisations may offer community transport sources > Paying bills by direct debit so visits to bank/ post office are not needed > Get shoppers bus to the supermarket > Order shopping online (if possible) have it delivered > Local council may offer mobility support through a community transport service > Encourage getting a lift with a family member or friend or make shopping a trip out

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How dementia affects vision

Living with dementia

One of the most significant changes you will notice in someone living with dementia is that their eyesight can deteriorate.

Here’s a quick look at how dementia might affect your loved one’s vision, and how you can support them.

Scuba vision When it happens: Early stages How it affects vision: Scuba vision blocks a person’s peripheral vision in the same way a scuba mask does.

This can make driving dangerous and walking more difficult, as you’re looking at your feet instead of what’s in front of you.

Advice for carers: > Ensure the person wears their glasses and attends the opticians > Make changes to the home environment > If you can try to encourage no driving

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Binocular vision When it happens: Mid-stages How it affects vision: Binocular vision narrows the focus on each eye, creating what’s called ‘social vision’.

This means people have difficulty seeing anything that’s not in their direct line of sight. And it affects depth perception too. It’s why someone with dementia might eat from a plate across the table rather than their own.

Because they can’t see their own plate unless they look down.

Advice for carers: Always approach your loved one from the front or the side, rather than the rear. That way, you won’t startle them. And if there’s anything they need, such as cutlery at dinner time or toiletries for daily grooming, make sure to place them in their direct line of vision.

Monocular vision When it happens: Later stages How it affects vision: Monocular vision creates a severely restricted field of view, like tunnel vision.

Which makes it really difficult to see the world around them. Having said that, it’s important to remember that your loved one’s vision will still be the main way in which they process information or any situation they’re in.

Advice for carers: At this point, your loved one will need help doing most things in their day-to-day life. To make things simpler for them, be sure to sit or stand directly in front of them. That way they’ll have a much easier time seeing and understanding you.

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Living with dementia

Eyesight Early Stages

Mid-Stages

Later Stages

Tips to help

>A t this stage people feel as if they have a scuba mask on (try a scuba mask on to see how it would feel to have a restricted view at either side).

Peripheral vision is blocked

> At this stage the person can see what you would see if you looked through a pair of binoculars.

They now have what is called ‘social vision’. It restricts their ability to see most things that are out of direct line of sight

> The eyesight is known as monocular.

The brain shuts off vision to one eye. This is because the brain is prioritising other bodily function, such as digestion, respiration and blood circulation. It is difficult to see, so it is important to stand in front of the customer. Do not talk behind the person or to the side

> Poor eyesight can increase confusion for people with dementia and can make it harder for them to recognise people and objects

>T unnel vision occurs. The vision window is about 1 metre wide.

Loss of sight occurs in all directions (left, right, up and down) >T he person doesn’t look forward or around as well, and has a focus down towards their feet, so not looking ahead At this stage help by reminding the person to use their glasses, keep the glasses clean and positioned close to the person so they have more of a chance to put the glasses on.

> It is the important to approach the customer from the front and place meals, drinks and glasses directly in their line of sight

> They will still be trying to see to communicate. Using non-verbal communication is important to the customer and the informal carer

> 80% of people with dementia are still able to complete an eye test using a special technique by an optometrist at an optician or at home. It is important this happens every six months to ensure the person has the right prescription > People with dementia may need to be tactfully reminded to wear their glasses and check their lenses are clean

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Hearing

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Tips to help > Support the person to have regular hearing tests (annually) > Encourage the person and informal carer of the benefits of using hearing aids

Age related hearing loss and dementia

People who develop hearing problems during midlife (age 40-65) years have an increased risk of developing dementia. It may also be one of the early symptoms of dementia. There are two types of hearing loss: peripheral hearing loss and central hearing loss. > Peripheral hearing loss is the reduced abilities of the ears to detect sounds. This does increase a person’s risk of developing dementia > Central hearing loss involves problems with processing sounds in the brain, that are not able to be corrected with ‘hearing aids. This may be an early symptom of Alzheimer’s disease, as sound processing parts of the brain can be affected

> Put the hearing aids in a place the person can see them and access them > Remind the person living with dementia to put in their hearing aids as they will forget

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Living with dementia

Incontinence Incontinence is the unintended passing of urine (urine incontinence) or faeces (faecal incontinence).

Some people have both types of incontinence (double incontinence).

Problems with incontinence and using the toilet may be due to the dementia itself, or other reasons due to physical health conditions. Incontinence can be distressing for the person with dementia and those who care for them.

There are many ways to manage incontinence and maintain the persons dignity.

Reasons why incontinence can occur in people with dementia:

Physical conditions that can cause incontinence including:

> Reduced mobility, causing difficulty reaching the toilet in time

> Constipation

> Memory problems – they might forget to use the toilet or remember where the toilet is located. > Difficulty recognising the physical signs of needing the toilet > Difficulty communicating that they need the toilet > Problems with coordination, e.g., undoing buttons and zips > Damage to the area of the brain that controls the bladder

> Prostate problems (males only) > Diabetes/ strokes/ muscular conditions e.g. Parkinson’s Disease > Taking medication that can affect bladder and bowel control

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Living with dementia

Tips to help

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Practical Tips > Ensure there is no fluid restrictions in the day

>F ind out the persons usual toilet routines e.g. the time of day and note the patterns

> Balanced diet with high fibre food, fruit and vegetables will help regular bowel movements

>L ook for non-verbal signs of needing the toilet, such as fidgeting, pacing, holding their crotch or stomach

> Put a written and picture sign on the toilet door to help the person locate the toilet

>K eep incontinence pads, disposable gloves in the bathroom

> Toilet seat and grab rails in bright colours will help (blue is more usual)

> Keep clothes simple and easy to remove and unfasten

>T ake note of how the person communicates when they need to use the toilet, ‘I need to go out’, ‘I need help’ for example

> Consider commode or urinal for night-time

> Consider a mattress cover for the bed

>T ry prompting the person to go to the toilet every two hours > Encourage the person to drink 6-8 glasses of fluid per day > The person may hide wet or soiled clothing or bedding due to embarrassment. Don’t point it out.

Simply retrieve it and replace the items >L imit how much they drink in the hour prior to bed >K eep incontinence pads, disposable gloves in the bathroom

> Going to the corner of the room

> Avoid constipation > Prompt toileting every 2 hours > Keep the toilet door unlocked > For men, keep the toilet seat up

> Be supportive, do not chastise or cause embarrassment

> Keep routes and the toilet clear > Velcro fastenings/ easy clothes helps > I ncontinence products can be available free on the NHS. This needs to be arranged by the local NHS continence service and an assessment on the person undertaken and a system put in place for the person to get the right products. This can be very helpful as the customer will receive the right assessment for the incontinence and also the right products to manage their needs

Supporting Information > Dementia UK – Continence and Dementia > Alzheimer’s Society- Continence and using the toilet

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Living with dementia

Keeping warm Sometimes people with dementia may not realise they are cold or warm or maybe are not able to tell someone. Dementia impairs the body ability to regulate temperature.

Our bodies strive to maintain an optimal internal temperature of 37 degrees Celsius.

This ensures proper functioning of the vital organs and metabolic processes. This regulation involves an area in the brain called the hypothalamus.

Dementia can damage or disrupt the functioning of the hypothalamus leading

to a diminished ability to control body temperature. Individuals with dementia may experience reduced perception of temperature changes. They may not recognise feeling too hot or too cold and therefore are unable to make appropriate measures to adjust their clothing or environment.

Risks include overheating, hypothermia and this can worsen the persons cognitive symptoms such as: behavioural changes associated with Dementia.

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Tips to help > Heat the house to at least 18 degrees Celsius > Close the curtains at night when it is cold > Encourage regular movement, such as standing and sitting each hour > Regular hot drinks and ensuring regular meals > Equipment can be installed to warn of extreme temperatures in the home > Monitor signs of distress or discomfort in the person

Supporting Information > Alzheimer’s Society – Keeping warm with Dementia > Age UK- Top tips for keeping warm and well > Government UK, - Keeping warm and well.

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Living with dementia

Falls People with dementia have a higher risk of falling. They are more than three times more likely to fracture their hip if they fall, which can lead to immobility, surgery and increased mortality.

The environment is important to be simple and clutter free.

Some symptoms can make people with dementia more at risk of falls.

People with dementia are at greater risk because they

Supporting Information

> Are more likely to experience problems with mobility, balance and muscle weakness

> NHS Inform – Falls and Dementia Alzheimer’s Society - Falls

> Can have difficulties with their memory and finding their way around > Can have difficulty processing what they see and reacting to situations > May take medicines that make them feel drowsy, dizzy or affect their blood pressure > Are at a greater risk of feeling depressed > May find it difficult to communicate their worries, needs or feelings

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Tips to help > Well-lit rooms > Avoid trailing wires and clutter on the floor > Encourage the person to stand up slowly when getting up > Make sure you have enough support and secure footings when reaching. Especially when reaching into a high cupboard > Avoid wearing clothes that are too long > If prescribed medications are making the person dizzy talk to a health professional > Wear good fitting slippers and shoes > Avoid patterned carpets and curtains which can cause perception problems for some people > Consider fitting grabrails on the stairs, toilet and bathroom. This can be arranged through an occupational therapist who works in the health care team > Wear prescribed glasses > Use all mobility aids in line with the instructions. Often people living with dementia who use aids can forget they need them so forget to use them. Prompting at the time will help keep the person safe

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Living with dementia

Care guide

Living with dementia

Sleep problems It is common for most people with dementia to experience sleep problems.

Sleep problems are difficult to overcome but the following can help:

Some people no longer can tell the difference between day and night, while others are not as active as they used to be and so need less sleep. This is a stage in dementia usually at early and mid-stages but not evident at later stage.

> Keep the environment for sleeping as comfortable as possible > Make sure the bedroom has familiar objects, night light and blackout blinds > Provide a day/night clock for orientation > Plenty of activities during daylight hours

> Avoid having daytime clothing visible > Keep bedtimes the same time and not too early > Music or radio playing soft music can help > Remind the person gently that it is evening and to go to sleep

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Sleep It can affect the persons wellbeing, and it can lead, to both the person with dementia and those caring for them to become stressed and more fatigued.

Disturbance in sleeping patterns is common amongst people with dementia and can come become more problematic as the condition progresses.

Some people with dementia can become increasingly restless, confused, agitated or distressed, as the sun is setting and when it becomes dark outside. This can happen at any stage of dementia but is more common during the middle and later stages. Sleep disturbance is known to affect 25% of people with mild to moderate dementia and 50% of people in the later stages of dementia.

Living with dementia

Sleep disturbance can affect the quality of life of a person with dementia and anyone caring for them.

Insomnia is a problem. The person takes a long time to fall asleep, waking up often during the night, having nightmares and waking up early morning.

Insomnia is common in people with dementia and different issues can cause this such as: > Pain and discomfort > Some medications can have side effects that can cause insomnia such as medications, donepezil, rivastigmine or galantamine (they can cause vivid dreams and nightmares) > People with dementia who have insomnia may be anxious, stressed and depressed

> Health problems, constipation, heartburn, incontinence and urinary tract infections > Excessive daytime sleepiness – dementia can disrupt our bodies normal cycle between day and night and their body clock. This means many people with dementia feel tired and sleepy during the day. They take naps that then can make it harder for them to fall asleep properly at night-time > This condition is common in people with dementia with Lewy bodies, Parkinson’s disease, dementia and in the more advanced stages of the disease

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Supporting information > Shaw Trust – Living with Dementia night-time disturbances > Alzheimer’s Society – Nighttime disturbances

Tips to help >K eep a routine, this is important when caring for people with dementia. This can help regulate the body clock. Do regular exercise and routines at the same time each day. This will help the person get a sense of time

> Getting natural daylight – ideally out in the morning can help to set the persons’ body clock. This might help them be sleepier during the evening. During the late evening you can dim the light to encourage sleep at bedtime

> Have a bedtime routine one hour before bed, offer warm caffeine free drink, use the toilet, brush teeth, play calming music or favourite radio programme

> Try to encourage enjoyable activities if possible, walking, gardening, hobbies and interests as it may help reduce the feeling of anxiety and restlessness

> Avoid caffeine, cigarettes and alcohol if possible

> Encourage a good diet and fluid intake to prevent hunger and a feeling of thirst at night

> I f the person cannot go out in daylight, a lightbox or natural light could be used to have the same effect

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Smoking It is more helpful if the person is living with someone who can keep the cigarettes or monitor during smoking, or at least keep the lighter or matches in a safe place.

Smoking can be difficult and a challenge as this has likely been a long-term routine, but safety is important.

Living with dementia

Smoking can increase the risk of both Alzheimer’s disease and vascular dementia. The person who has dementia and smokes runs the risk of starting a fire because they may forget they have lit a cigarette and could leave it burning.

Tips to help > People with dementia, sometimes as the disease progresses forget they smoke > Having the cigarettes without a lighter can sometimes be enough to comfort the person with dementia > Get smoke alarms fitted. The local fire brigade will come and assess the property for risks and for fit the fire alarms for free > No matches available can help with safety > If the person with dementia does forget about smoking, they can become irritable, agitated and restless

> Contact local health services for support on quitting smoking and support to help – local smoking cessation clinics > Consider an e-cigarette as an alternative > Nicotine patches can be helpful for people with dementia. Health professionals can develop a plan for the individual person to help them slowly reduce the nicotine intake > If carer is a smoker, get support to ‘stop smoking’ and quit as a buddy > Remove ashtrays out of sight as the person may forget they smoke

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Supporting information > ASH – Scotland > Alzheimer’s Society: Smoking and Dementia

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Physical activity People with dementia and their families face a very difficult time following a dementia diagnosis. This includes changes to relationship, changes to lifestyles and often social isolation. It is important to try and help people early in the dementia pathway to maintain physical activities.

Living with dementia

Physical activity is important for everyone. This includes the person living with dementia and their family. It is known that physical activity improves peoples’ overall well-being and reduces physical and mental health illnesses.

The physiological benefits include:

The physical benefits include:

> Improve mood and reduce the symptoms of depression.

> Improvement to the health of the heart and blood vessels which can prevent heart disease and risks of changes to blood pressure

> Can help improve the focus and attention of the person living with dementia > Maintains and improves confidence > Evidence suggest it can reduce fatigue and improve energy levels > In some people it can help in strength and balance and therefore reduce falls > Improve sleep time and quality of sleep

> Supports balance, coordination and strength > Improves the circulation to prevent stroke, diabetes and other illness > Support joints being flexible and maintaining strong muscles > Short periods of activity and exercise are important for all but particularly for people with dementia

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Supporting information > Moving Medicine- Providing movement for dementia Young Dementia – Exercises and keeping healthy. > Alzheimer’s Society -Physical health and exercise

Tips to help > It is important to find out which activities and physical exercise the person with dementia used to enjoy – e.g., hobbies, old interests >O nline games and puzzles and using dedicated dementia apps >B eing part of a community for activity and exercise can help with socialisation, interaction and physical health >D oing things, they enjoy >S tay socially active – local groups >B uild physical exercises and wellbeing into daily routines

> Dementia cafés, sensory gardens, cinema screenings and live productions > Decide if activities will be supported 1-1, or in a group or with family or friends or a mixed schedule > Evidence suggests 150 minutes of moderate activity per week > This needs to be tailored to the individuals’ preferences, choices, lifestyle and in line with the persons illness level > Playlists for life, music and Active Minds has a range of resources for people with dementia

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Living with dementia

Pets, hobbies & interests

Having dementia doesn’t stop people doing the things they enjoy it becomes more important to help supporting the persons interests.

Shared activities and shared interests can often help informal carers feel able to spend quality time together.

Activities that can be dementia friendly classes in local areas include: > Swimming, gym, walking groups, art-based activities and book clubs

> Age UK offers advice on social activities in the local area

There are all sorts of activities you can still do – physical, mental, social and creative that help people living with dementia and improve wellbeing. Staying socially active can help people keep in touch which is good for maintaining confidence and mental wellbeing.

> Reminiscence work can help the individual share their life’s experience and stories from the past with photos, videos, objects and music

> Dementia UK has details on holidays available in the UK and abroad for people and families living with dementia

> Memory cafés are available in local areas for the person with dementia and informal carers providing support and advice from the café leaders and other people in the same situation

> Activities for late-stage dementia are often simpler such as having objects to touch and interact with, playlists and hand massage. It is at this stage focusing on the senses is key such as sight, hearing, touch, taste and smell

It is important to understand the persons interests and support the person to maintain their interests.

> Singing is known to be good for the brain.

This can be done at home or in a group. There are local groups of singing delivered by the Alzheimer’s Society > Tablets, smart phones and laptops can be helpful devices for online games, dementia apps and YouTube for reminiscence

Managing pets that people with dementia have is important as the pet will bring comfort and unconditional love. However, a plan of care needs to be in place for the pet too. This will help maintain the safety of the pet in such as feeding and exercise, to help maintain the animal’s routine

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Living with dementia

Pain People with living with dementia can often not express verbally that they have pain. It is therefore important to observe the person closely in the in their usual everyday living.

This helps the carer and informal carers recognise sometimes when the persons behaviour has changed something is wrong, as the person with dementia cannot express what it is happening.

The most obvious way to find out if a person with dementia has pain is to ask them,

but as their condition progresses it will be more difficult for the person to express that they are in pain. They can often use the wrong words to explain how they are feeling, and it helps to ask specific questions.

People with dementia, especially those who are older, often have other health conditions as well. It is important they have regular health check-ups, attend appointments and take their prescribed medications.

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Signs to look out for in people who may be in pain include: >F acial expressions like grimacing or frowning >S eems distressed during personal care like washing or dressing

Tips to help > I nactivity and a lack of movement can contribute to pain if the person is sitting in the chair or bed for long periods. They need to be encouraged to get up regularly if possible and support them.

Encouraging movement and getting drinks and moving about is important >P oorly positioned in a chair can cause pain so encouragement to use of cushions or the right type of chair will be helpful >H eat or cold packs can help reduce pain and ease stiffness: use of ice packs or hot packs (with caution and support) can be helpful to ease pain

> Constipation can cause pain and discomfort, this can occur when the person has a limited diet, low fluid intake and has become less mobile.

Encouraging a balanced diet and drinking can help > Asking specific questions about the pain may help may identify the source of the pain e.g. > ‘Is your arm aching’.? > ‘Does it hurt here’? > ‘Does it sting’?

>S leeping pattern changes either sleeping more or sleeping less >P hysical changes like sweating, appearing flushed or pale, fast pulse or changes in temperature >C hanges in appetite or refusing food > Appearing in a withdrawn mood Using a pain rating scale may help to identify if further help is needed by a health professional.

It can also help assess if the pain is improving or deteriorating.

Supporting information >W ong-Baker faces – Pain rating score

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Mood Sometimes they overreact, have mood changes quickly and appear irritable. They often can feel uninterested in things they usually would have been interested in or appear unusually distant. This is one of the main changes in people with early dementia.

There is a body of evidence that supports that one in four people in the UK experience depression at some time on their lives (it is suggested this is higher post Covid-19).

Living with dementia

People with dementia often experience changes in their emotional responses.

They have less control over the feelings and how to express them.

Identifying anxiety, depression and low mood means the person experiencing this can be treated and supported in the correct way.

Untreated means the condition can become more severe, resulting in further distress or deterioration in their overall health. Some people can help from talking to someone professional about how they are feeling.

Talking therapies may be helpful for some people. This can include counselling, Depression is more common amongst people physiotherapy and cognitive behaviour with dementia where 40-50% of people therapy. Dementia is a life changing and life with dementia experience depression. This limiting experience and is stressful to the is more prevalent in people with vascular person living with dementia, their family, dementia and Parkinson’s disease dementia. friends and other informal carers. People

diagnosed with dementia and their wider family have a lot of changes in their life and therefore a lot to cope with.

Mood changes can be difficult to cope with as well as the changes a dementia diagnosis brings. People with dementia can feel frightened, frustrated and concerned about how the disease is affecting them and the impact such as a memory loss or language problems. People with dementia can also experience a lack of interest or concern and sometimes they may lose control of their emotions. Even in later stages of dementia people can experience emotions such as joy, sadness, love and fear.

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Supporting information > Shifting Focus: Guide to understanding dementia behaviour.

Alzheimer’s Society > Dementia UK Helpline -Admiral Nurse (0800 888 6678)

Depression can cause isolation, sadness and irritability. Depression can make the symptoms of dementia worse causing increased challenges such as confusion, anxiety and forgetfulness. Apathy can affect people with dementia. This is a lack of motivation or loss of interest. It can then make people withdraw and feel unable to do anything. This can be distressing and frustrating for the family and other caregivers.

Tips to help > Establish a daily routine. This will reassure the person and give some structure as well as reduce confusion of day and night > Set some realistic expectations. If the expectations are too high the person will become frustrated and discouraged > Encourage some activities that the person might enjoy. e.g., sitting outside, walking or outing (short events) - Make the person feel valued > Make the person living with dementia feel involved in family events, groups or discussions even if there input or response is limited > Get support from professional people around to discuss any treatments for the person’s needs

> Alzheimer’s Society UK – Getting treatment for Mood, Anxiety and Depression

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Behaviour Understanding why someone is behaving differently may help families and informal carers cope.

There are many reasons why a person’s behaviour may change. Dementia is a result of physical changes in the brain and these changes can affect the persons memory, mood and behaviour. Sometimes these behaviours can be related to the changes but at other times, the behaviour may be triggered by changes in the persons environment, health or medication.

Understanding the cause of the behaviour changes can help to put in place strategies

Living with dementia

Dementia can cause changes in the behaviour of friends, family and loved ones.

Changes in behaviour are very common and can cause a lot of stress for the individual and the family and informal carers.

that are helpful. Sometimes an informal carer keeping a diary or log of events helps them be able to identify patterns of behaviour that may be developing, and this helps them identify the causes of the changes.

Living with Dementia is life changing for the person with the illness. They may fear their loss of memory and thinking skills and fear the loss of who they are. They may also not understand what is going on or why. They can feel they are not in control of what is happening around them or to them. All of this can affect behaviour. Recognising and

documenting the behaviour changes are important. Although changes in behaviour can be difficult to deal with, it can help to work out the triggers. Documenting the behaviour and times it happens and what may have caused it helps informal carers make helpful changes.

Changes in behaviour can often be the first sign that a person may be unwell. This for some people can be gradual and for others can be very sudden. The person may start to behave out of character. It is not always dementia.

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Tips to help > People living with dementia can become aggressive, wander, have difficult sleep patterns and experience hallucinations > Making simple changes can help manage symptoms and improve their wellbeing > It is important as a care giver to know a person living with dementia responds more to your facial expressions, tone of voice and body language more than words

The person with dementia may demonstrate different behaviours due to: > Physical health or mental health problems > Fear of the dementia and how they are experiencing the changes e.g., memory loss, language problems > Not knowing the time, date or the year and starting to not recognise familiar places > They can become disorientated in their own home and can become distressed due to this > A feeling of being out of control, frustration of how others are behaving towards them or a feeling of not being listened to or understood > Simple changes can affect a person with dementia

> Tiredness, too warm or cold, hungry, thirsty, unable to express a need and other issues such as for e.g., needing to use the toilet > Environment is not right, television to noisy or not liking what is on the TV all can affect the person living with dementias behaviour > Forgetting to put their glasses on or hearing aids in can cause challenges > The person sometimes misunderstands the person who is trying to care for them as threatening or a nuisance, particularly around times of needing personal care

> Using eye contact, a smile or a reassuring touch can help and covey your message and show you compassion > Look at their body language and try to understand what they might be feeling > Was there a trigger? Common reasons include communication, trouble with tasks which make the person feel helpless > Are they hungry, thirsty or in pain, has there been any loud noises or a frantic environment that may have been the trigger > Does changing the environment by playing their favourite music help comfort them? > Create a calm environment

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Living with dementia

Repetitive behaviours People living with dementia can ask things repeatedly. They may become clingy and shadow the person caring for them e.g., following them to the toilet. These behaviours are upsetting and can be irritating for informal carers.

Things that can help repetitive behaviours include: > If an explanation doesn’t help, distraction sometimes helps, a walk, food or doing a favourite activity might help. > It may help to acknowledge the feeling being expressed ‘what am I feeling today’ may mean the person is feeling lost and uncertain and a response to the feeling might help > Do not remind the person that they have already asked a question > Repetitive movements may be reduced by giving the person something to do with their hands, such as soft ball or clothes to fold

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Agitation in people living with dementia It is important to ensure the person living with dementia does not have an underlying physical problem. Common physical problems can include a urinary tract infection or constipation. It can also be causing agitation through the side effects of some medications.

Sundowning in people living with dementia People with dementia may become more confused, restless or insecure later in the afternoon or early evening. This is known as sundowning, and these behaviour changes can become worse after a move or a change in routine. The person becomes more demanding, restless, upset, suspicious, disorientated and even see and hear things that are not there.

This can especially happen in evenings and especially at night. At this time, attention span and concentration can become even more limited. Some people can become more impulsive, responding to their own ideas of reality and this places them at risk.

Actions: >Involve a health professional. > Try to stay calm and avoid confrontation.

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Living with dementia

Personality changes People who have dementia behaviour can change for many different reasons. Dementia usually happens because the person is losing neurons (cells) in part of the brain. The behaviour and personality change you see often depends on which part of the brain is losing cells.

People with dementia often act in ways that is different from their ‘old self’, and these changes can be very hard for family and friends to deal with.

Parts of the brain affected The frontal lobe is the area of the brain right behind the eyes. The frontal lobe of the brain controls our ability to focus, pay attention, be motivated and other aspects of personality.

When cells in the frontal lobe are lost people are less able to plan or stay focused. The frontal lobe controls our impulses, someone with frontal lobe deficits may be rude or insensitive as the disease progresses.

In other types of dementia different parts of the brain are affected. Dementia alters how a person responds to the environment, and people with Alzheimer’s disease for example have problems completing daily tasks. Depending on the type of Dementia different skills and ways of behaving change.

At first people with Alzheimer’s for example, have memory problems and can have a change in language, mood and thinking skills. They have difficulty following conversations and they may become angry and frustrated because they cannot follow what is going on.

Noise, conversation, crowds and activities may be over stimulating and too difficult to process and understand.

People with dementia rely on others for emotional cues. For example, if you are worried and anxious many people with dementia will mirror your emotions and become anxious as well and worried.

Behaviour can change due to physical health issues quickly like pain or infection.

They may have pain but be unable to describe it so instead act out angry or be less active.

Urine infections, constipation and poor sleep are conditions that can cause sudden changes in behaviour. Some medications also can cause a change in how a person with dementia behaves.

Supporting a person with dementia requires understanding and patience.

It will be difficult for family and friends who can see a complete change of personality in the individual which can be gradual or sudden. This can be very hard for the family and carers to notice and live with the changes and making the adjustments can be very hard.

Often the family need more support than the person living with dementia, due to the many changes that happen.

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Tips to help > If the person with dementia acts out in an angry or in an irritated way, it is a way of telling others they may be overwhelmed, confused or frightened > Try to identify the causes of the triggers to the behaviour > Does the behaviour change a bath time? > Consider whether the behaviour is risky and hazardous, versus annoying and frustrating. Risky and hazardous might be when the person gets angry and tries to walk out of the house in an unsafe manner. You might have to respond by walking with them and distracting them

> Talk to other carers, join support groups where you can share and learn other strategies > Annoying and frustrating behaviour may require a softer response. For example, if the person paces around the house but is calm and doesn’t try to leave, it may be best to use distractions or accepting that pacing is okay > Create a daily routine that is structured and predictable for the person with dementia. Routine is an important source of comfort > Unexpected visitors to the home can disrupted the routine and change the persons behaviour

> Try to be calm and patient, this may mean taking a break, maintaining your own health and wellbeing.

Go into a different room, take a break and count to 10 > Foster an attitude of acceptance, the behaviour changes are due to real issues and are not because the person is trying to be difficult

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Living with dementia

Wandering Wandering can be a behaviour that can present. Often people living with dementia wander when they get bored, anxious or stressed. This can be due to an uncomfortable environment or lack of exercise.

Actions to help, include redirecting the person indirectly into a productive activity or exercise. Reassure the person if disorientated. Reduce the noise levels e.g., turn the sound down on the television or radio or move the person to a quieter place.

Wandering and dementia and restlessness in people with dementia > Can happen due to a changed environment > Loss of memory > Expressing boredom > Agitation > Believing they have a job to perform > Excess energy > Searching for the past > Confusing night and day > Discomfort or pain

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Actions: > Check the person has no physical illness changes and check it is not related to the side effects of any medication > Make sure the person is eating and drinking > Have a day routine and walks if possible > Accompany them to the shops or on walks (or consider tracking devices or alarm systems) > Give them something to occupy their hands if they fidget a lot or develop a box with items that mean something to them

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Living with dementia

Independence & keeping safe Independence is important to maintain for as long as possible and keeping active will help the person to remain positive about the future which is important.

Being diagnosed and living with dementia need some changes to the usual daily living but this can be introduced easily and increased as the illness progresses.

Keeping things simple is important as problem solving becomes harder. Small adjustments can help but as the illness progresses it is important to make key plans for the future.

People when diagnosed with dementia may feel a range of different emotions. These often include fear or loss of selfconfidence as well as uncertainty about the future. People can feel overwhelmed, frustrated and angry.

Tips to help > Extra help with daily activities such as housework, shopping and home adaptations can be helpful > Changing the environment to a dementia friendly environment early in the dementia diagnosis period to get the environment safe and individual wishes documented and in place > Adaptations to the home can be made and referral from the GP to an occupational therapist will be helpful. The occupational therapist can do a home visit and arrange > For adaptations to help at that time and to also advise for the future. This can include handrails, stairlifts, changes to the bathroom and advice on the wider environment

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Daily living aids can be very helpful. For example: > Large clocks showing date and time

The aim of the review is to consider what can be changed or adapted to make the home as safe as possible.

> Planning the day. It is evidenced based that routines for people with dementia and structure to each day supports the person with dementia. > Putting in place systems of reminders of medications, appointments, activities and other important information > Try to help the person do as much as possible, usual activities, hobbies, washing and dressing > Clothes with easy-to-use zippers/fabric fasteners, elastic waist bands can help > Having each meal at home in a familiar place and giving more time to eat meals > Keep a calendar and lists ,”to do ,”can help > Set up direct debits to support financial management > Curtains and carpets with busy patterns are not helpful for people with dementia

> Telephone with big buttons – they can be preprogrammed for easy access to family/friends > Easy radios and music players with easy controls > Reminder devices to prompt > Smart phones, tablets and dementia friendly apps > Locking away cleaning products Supporting information > Tips for living alone with EarlyStage Dementia -National Institute of Ageing > Living alone with Dementia – Dementia UK If you live alone – Alzheimer’s Association

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Living with dementia

Relationships Relationships can be the most difficult change for the person with dementia as well as for their family. Dementia can cause relationships to change. It can be difficult to adjust, and it may take some time.

Dementia can affect all aspects of a person’s life including relationships with family and friends. The relationship does change. It is key to remember that everyone experiences dementia differently. As the symptoms of dementia worsen it likely the person with dementia and the family will need help and support to manage the changed relationships.

Other ways the relationship may change > The person with dementia may become more irritable and less patient and family members and friends can find this hard to cope with > The person with dementia may start to forget people’s names – this can be frustrating for everyone > The person with dementias partner, child or friend may become their carer and this is difficult to accept > Sex and intimacy – they may become less interested in > The person with dementia may not know who their key people are anymore and this can be very distressing

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Supporting information > NHS England – Dementia and Relationships > Young Dementia – Intimate Relationships > Alzheimer’s Society – Sex and Intimacy

Tips to help > I t is important to talk to someone about these changes and how it feels, as well as the frustrations > I t is important the person with dementia and the informal carer keeps connected with family, community and activities for as long as possible >C ommunication with someone living with dementia needs to be different to the previous relationship (see communication tool kit for help) > I t can be helpful to join community groups or online groups that offer support for people and families living with dementia >K eep a good routine with the daily living of the dementia family member

> A range of emotion exist in the new relationship.

The informal carer has to face a mix of feelings that can be uncomfortable and unhealthy. Informal carers may feel overwhelmed, depressed, desperate, frustrated, trapped, confused, isolated, alone and guilty. These are all natural reactions to the new relationship and adapting to living with someone with a dementia diagnosis > Plan times for time out of the informal carer’s role on a planned regular basis to maintain health and well-being > Get a network of support to help manage the changed and changing situation

> Dementia UK – Sex, Intimacy and Dementia

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Living with dementia

Communication with people with dementia It is important to communicate well with a patient who are living with dementia.

People with dementia have difficulty in communicating and therefore learning to listen is key for family members and others.

The person with a dementia diagnosis, communication may alter over the dementia journey. Staying calm is important to ease the person with dementias anxiety during communication. The person living with dementia might speak and not make sense, but it is important to remember the person is trying to communicate something to you.

How dementia complicates communication:

Non-verbal communication is very important, as is body language because the person with dementia is trying to work out how to express themselves and be understood.

If the person cannot find the answer straight away or find the word, it is important to be patient and let the person find their own words. Give people longer to process the spoken word and instruction.

There are two main ways that dementia can affect someone’s ability to communicate, it can interfere with their ability to get their point across, or it can interfere with their ability to process what others are saying.

Although it is difficult to predict if, or how, a person’s dementia may affect their ability to communicate ahead of time, there are a number of problems that are fairly common for people living with dementia.

Care guide

Living with dementia

Ability to get there point across, problems include:

Ability to process information problems include:

> Finding It difficult to find the right words they are looking for even when it’s on the tip of their tongue

> Difficulty understanding spoken or written words

> Difficulty articulating what they mean or getting their point across >S peaking in an unusual way, or in an unusual pattern that is difficult for others to follow >R epeating particular words or phrases > Feeling embarrassed about their difficulty talking >S aying things without thinking about the consequences >U sing inappropriate language or saying things that make others uncomfortable

> Struggling to keep up with conversations > Not recognising that someone is speaking to them, and not to someone else > Becoming confused and or losing track of what is being said > Finding it difficult to focus on the voice of one person when lots of other noises are happening > Feeling overwhelmed by information

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> Due to the difficulty with communication as the dementia symptoms worsen the informal carer and carer need to be skilled to consider other questions, use observation and be mindful of the issues and problems the person living with dementia may be facing, such as: - Is this person in pain?

- Are they anxious?

- Might the person have a temperature or an infection?

- Are they unwell?

- How is their mental health? Are they depressed?

- Are they very tired?

>L oss of ability to sign or gesture

- Are they hungry?

>R eduction in and eventual loss of speech over time

- Have they taken their medication?

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Living with dementia

Communication with people with dementia Other things that might be easier to act on: > Is the person wearing their glasses? > Are they the right glasses (distance or reading) and the right prescription? > Does the person have tooth ache? > Do their dentures fit? > Is the person wearing their hearing aids? > Do they need the toilet again?

There are so many factors that can change the way that a person with dementia communicates, it is often up to the informal carer or carer to work out what is wrong.

Things to consider in the environment include: It is important to realise, however, that the person living with dementia isn’t clearly explaining the source of the problem in the way that we were expecting, it doesn’t mean they are not communicating their needs. How a person moves and what they say, or don’t say, are all cues to understand what they need. The role of the environment in communication is important to understand. In noisy environments it can be difficult to think.

> Is the environment comfortable (might it be too hot or too cold?) and are they sat in a way that might be comfortable? > Is the environment familiar? > Are you in an environment that is relaxing (like a familiar place, or at home) or somewhere where the person might feel stressed (like a hospital, dentist or an unfamiliar location)? > Are there lots of distractions (there can be noises, sights or smells)? > Is the location crowded? > Is there enough light for the person to see clearly?

> Are there loud or disturbing noises like a crying baby, an announcement system or a siren? > How did the person get to where you are – was the journey stressful? Might they be tired or need the toilet? Do they feel hurt? > Is the television behind you?

While these might not be all the factors that might make it difficult for a person living with dementia to follow conversation, they are good examples of the kind of factors that may be worth thinking about if someone’s communication ability changes a lot between places.

Care guide

Living with dementia

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Managing our communication to help people with dementia Verbal communication accounts for about 7% of our total communication. Informal carers and carers need to look at themselves and adjust to try and get the best ways to communicate with someone with dementia. It is important to think that when communicating the following: > Where am I? – Am I in front of the person?

Am I too far away or too close? Am I at their height or am I towering over them? > How am I acting? – Do I look interested in what they have to say? Am I facing towards the person, am I watching their face, am I making eye contact? Am I being impatient?

Am I annoyed? > What am I wearing? – Can the person see my face and mouth? Am I wearing a large scarf or reflective sunglasses? > How am I communicating? – Am I speaking clearly? Can the person hear me? Am I using gestures? Am I raising my voice?

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Living with dementia

Communication with people with dementia What can be done to improve communication? > Make sure you have the persons attention before you begin – consider using their name or a gentle touch to get their attention > Keep what you say brief and simple, but we don’t use a childish tone of voice > If you are giving instructions or asking someone to do something, keep it straightforward > Think about how you use gestures – do your movements and the same message as your words?

Common mistakes in communication > Be calm and patient – remember, the person with dementia might have to work harder than you to think and listen to what you are saying, understand your meaning, and choose an answer > Be prepared to ‘play detective’ and think about the meaning behind the words > Provide the person with visual and auditory clues about what is going on > Refer to simple aids, such as white boards, calendars and diaries where possible

When we use photographs to reminisce, we often test the person by asking who is in the photograph?

It is easy to, see the photograph?

A person with dementia cannot remember and gets agitated and anxious. It is our usual reaction then to say you know who it is, it was only a few months ago this event? This isn’t helpful and not jogging the persons memory, it just causes distress. Look at the photograph together and talk about the people in the photograph together.

Care guide

Living with dementia

Giving too many instructions at once Some people with certain types of dementia can find it difficult to make sense of lots of information all at once.

This might affect their ability to follow directions or mean that they get part way through a task and forget how to complete it. One way to avoid this is to change the way we ask people with dementia to do things by breaking it down. For example, if we were to say: >T he way to say it, to help the person process and complete the task without anxiety, is to break it down >M ake sure your mum is listening, ask her to put her coat on

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Getting into arguments > ‘Mum! Could you put your jacket on?

I need to find the keys, and we need to run into town in the car to get a wedding present for Jane before the traffic gets bad and the shop shuts!’ – that might be too much information for someone with dementia to process at once > Once she has done this explain that you are going to the car > Allow time for her to process that > Explain that you are going into town to pick something up > This allows processing time and each step acts as a clue to the next step

As dementia progresses, the person living with dementia will find it hard to see other people’s point of view. This is a key change and needs to be understood.

If the person is unable to see the subject from a different perspective, you won’t be able to persuade them to see things your way, or that you are right.

For example, if they believe their mum and dad are alive then you must enter their world that could be at any place and time.

It is important to remember that arguing is stressful for a person with dementia and the informal carer. Often the person

may not be trying to be difficult – instead how they have been affected by the changes in their brain, has caused the changes. This is not their fault, and it is not yours either. Instead of arguing, consider if it is important that the person with dementia ‘sees things your way’.

If it is about safety, the answer maybe ‘yes’ and you may need to consider support. If the answer is ‘no’, ask yourself: ‘is it worth having the argument.

Living with the dementia may now mean they might never see it from your perspective?

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Living with dementia

Environment & safety in the home

Making some simple checks and adaptations to the home of a person with dementia can help them stay safe and comfortable.

To help a person with dementia recognise their own home and reduce confusion:

Other safety measure to consider:

Making the hallway safe and comfortable

> Avoid making any significant changes to the exterior, such as changing the door colour or cutting down hedges or shrubs

> Fit a sturdy handrail to prevent falls

>K eep the hallway uncluttered so it is easy to get through the front door

>E nsure the door number is large and easy to read > Put an easily identifiable object like a garden ornament outside

> Ensure there is sufficient lighting – a motion sensor light means the person will not have to remember to turn it on and off > Install a camera security bell which will allow you to see who is coming and going. You can set it up to receive alerts to your phone > Fit a key safe so family members, carers and emergency services can gain access if the person cannot open their door

>H ang an easy-to-read clock near the door displaying time, date and day to help the person tell if it is time to go out > Keep keys in a set place – easy to find >U se gripper tape to secure doormats or carpet runners to reduce the risk of falls or remove them completely > Fit a door assist and alert if the person is likely to leave home alone when it is unsafe for them to do so

Care guide

Living with dementia

Making the kitchen safe and comfortable The kitchen can be a confusing and potentially a dangerous place for a person living with dementia.

These tips will make it safer and easier to manage. > Keep frequently use items like mugs, tea/coffee and spoons on the worktop >C onsider replacing solid cupboard doors with clear doors so that the contents are easy to see. If this isn’t possible, stick a simple sign or photograph of the cupboards contents to the door to show the person what is inside >W rite a simple instruction for appliances like the microwave and washing machine and keep them next to the appliances

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To reduce the risk of accidents in the kitchen, you could: > Make sure labels are clear, easy to find and at eye level > Clearly label hot and cold taps > Regularly check the fridge and throw out food that is out of date > Look into assistive living products to help maintain independence and safety such as kettle tippers, jar openers and easy grip utensils > Use a whiteboard for reminders of important household tasks. For example, locking of doors, taking the bins out, charging their phone

> Keep toxic products in a locked cupboard > Hang the oven glove in an obvious place to remind the person to use it > Put frequently used items like saucepans and tinned foods in a bottom cupboard so the person doesn’t need to climb to them > Replace pans with metal handles with plastic ones, as these can get very hot > Fit a free gas valve limiter to the cooker to prevent the gas being left on or switched on accidentally > Use a flood and scald prevention plug in the sink

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Living with dementia

Environment & safety in the home Making the living room safe and comfortable > It is important to make sure that the furniture is comfortable and supportive. Assisted chairs that rise, lower and tilt can be very useful.

Putting up family photos can act as a memory aid and help the person stayed grounded in time - you could label them with people’s names > Keep items like glasses, mobile phone, remote controls in a consistent, easily accessible place such as a side table or armchair

Making the bedroom safe and comfortable organiser. This will help prevent them getting mislaid and prevent the person having to get up and down > A simple universal remote with large clearly labelled buttons are helpful.

Smart devices such as Alexa, Siri or Google can be programmed to perform tasks such a putting the lights on and off, giving reminders, playing music and reading audiobooks. Leave a blanket or throw in the room in case the person gets cold

> Minimise clutter to reduce the risk of falls > Use a movement or bed sensor to make an alert if the person is getting out of bed > If the person has incontinence issues, fit a waterproof mattress cover.

Ensure to get the pads and pants that are comfortable and will last all night > Choose bedding and nightwear that are appropriate for the weather

> Use a night light or touch operated bedside light so that it is easy for the person to turn on if they get up in the night > An easy-to-read clock on the bedside table might help the person know what the time is to get up, and the time to go to sleep > Consider laying out the persons outfit ready for the next day to reduce confusion over suitable clothing

Care guide

Living with dementia

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Adapting walls and floors > Choose matt flooring and wall as shiny surfaces may appear wet and slippery > Avoid pattered wallpaper and curtains, which can cause confusion

Make the bathroom safe and comfortable >S tick a written sign and a picture on the toilet door to help identify the bathroom

> Buy toilet paper and towels that are different colours for the toilet roll holder, walls and floor

>L eave the bathroom light on in the night to help the person find their way

> Provide a shower seat if the person has mobility or balance problems

>F it the toilet seat and lid of the seat in a different colour to make it more visible

> Use flood and scald prevention plugs in the bath, shower and hand basin

>U se free standing toilet roll holder > I nstall hand rails and handles in the bath, shower and toilet

> Remove toilet and bathroom mats – they can be trip hazards or other obstacles if the person has problems with perception

> Try to use a consistent style and colour of flooring throughout – changes in pattern or colour can look like an obstacle or step > Avoid dark coloured rugs which can look like a hole in the floor > Stick coloured tape around door frames and the edges of steps and round light switches to make them stand out > Ensure floors are completely dry after mopping to reduce the risk of slipping

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Living with dementia

Environment & safety in the home Reduce the risk of the person falling at home

Home fire safety

any people with dementia are prone to falling which M often happens at home. Some of the things that can reduce the risks:

> Ensure the persons shoes and slippers are sturdy and fit properly- avoid backless slip-on shoes or slippers

>F it smoke alarms in the hallway, landing and every habitable room (not bathroom) and a heat sensor in the bathroom

> Ensure there is not clutter on the floor such as trailing wires, shoes or toys

> Remove rugs or ensure they are stuck down

>F it carbon monoxide detector

> Remove furniture with thin legs that can be tripped over

> Fire services will do the safety check of all fire and smoke alarms

> Install sturdy bannisters or rails on the walls and in places around the house and garden where they are most likely to fall

> Consider a personal falls alarm that the person can press to summon help

Care guide

Living with dementia

Light and noise in the home

Other helpful environmental changes

> A home should be well – lit during the day and dim and cosy at night to keep the person safe and comfortable. The following are helpful tips:

> Reducing noise can help, carpets and curtains absorb noise. Laminate or vinyl flooring can be uncomfortable for people with hearing aids as it is nosier

> Open the curtains during the day > Install lightbulbs with high wattage > Place the persons favourite chair by the window so they can get plenty of daylight and watch outside > Use portable or plug in night lights in hallways and landings > Fit blackout curtains in the bedroom to help the person sleep > Use timer lamps to switch their lamps on and off at appropriate times

> Choosing contrasting walls and floors and matching the furniture bright colours that contrast > Crockery in contrasting colours (avoid stripes and bold colours as they disorientate and confuse people with dementia) > Mirrors can cause distress and confusion (they don’t recognise themselves)

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> Contrast doors and banister to make them stand out > Closing curtains at night prevents the person with dementias seeing themselves in the window > Better lighting helps avoid confusion and reduces falls > Outdoor garden area – keep surfaces flat, flower beds raised and have a selected seating area > If wandering have an identity bracelet, use a tracker, security camera and ring bell can help

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Living with dementia

Customer tips: Art time Self-expression is an important means of communication. Whether you’re painting, drawing or making a collage, making art can make you feel better and decrease anxiety. Which is incredibly important to someone who’s living with dementia.

If your loved one has been diagnosed with dementia, their ability to act and live independently greatly diminishes. Making art can help. It gives them the freedom to create and express themselves, which can be quite powerful.

Art time isn’t about making masterpieces. It’s about a process. It’s about the joy that comes in creating something. The satisfaction your loved one feels in finishing it.

It can also be a real bonding experience between you and your loved one. So make sure to join in. That way if they have any trouble, you can easily help them out, whether it’s putting a paint brush in their hand as a

reminder or modelling the painting to help get them started.

To begin, ask your loved one what they’d like to create.

If they aren’t sure, suggest something that makes them feel happy. There’s no wrong answer. It’s just a chance for them to be in charge. Ask them to name their artwork and write the name on the back. Let the artwork be 100% theirs. Once they’ve finished, look at the artwork together. Talk about what it means, what the colours represent and how it makes both of you feel. You might want to have a notepad and pen to hand, as some of the things your loved one will say can be quite touching and telling.

If you want, find some music that your loved one enjoys and play it while they create. This can add real joy to the activity, and help turn art time sceptics into people who can’t wait until the next art session begins.

Planning for art time > Set a weekly time for creating art > Plan around 30-45 minutes for the session > Gather art supplies: pencils, watercolour paints, small/large paint brushes, art or copy paper, magazines for collages (you’ll need to cut out images and place them where your loved one wants), a water bowl for rinsing brushes (no cups, as they might think it’s for drinking with), and paper towels > Don’t use children’s colouring books or crayons for this activity > Gather clean-up supplies for when you finish > Find some music you know your loved one will enjoy

Care guide

Living with dementia

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Understanding dementia

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bluebirdcare .co.uk

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Don’t be surprised at how you are feeling > Overwhelmed

> Guilty

> Depressed

> Grief stricken

> Trapped

> Just coping

> Angry

> No ides where to turn

> Frustrated > Confused > Isolated > Alone

> Unsure about what help is available > How can you get financial help

Care guide

None of these feelings are unusual for you or your loved one living with dementia.

Acknowledge this is a natural reaction to a stressful and challenging situation.

It is a good idea to talk about how you are feeling, reach out to a local dementia support group, friends or health professionals.

Living with dementia

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Understanding dementia

Caring for the carer

Be a healthy carer. Look after yourself, so that you can look after your loved one.

Do >B uild your own support network of people who can help you and your loved one > Research the different respite care options out there > J oin online or local community support groups

Don’t > Get lots of sleep > Stick to a healthy diet, or start one > Ensure you get some free time to yourself outside the home, at least once a month > Keep your medical appointments – don’t skip or cancel them

> Get some exercise each day

> Neglect your health

> Do hobbies and other things you enjoy, whenever you can

> Isolate yourself

> Make sure that all legal and financial papers are sorted (e.g.

Power of Attorney)

> Eat on the run

> Ignore your friends > Blame yourself or your loved one because of dementia > Feel guilty or ashamed for wanting a break

> Stop doing the things in life that bring you joy > Lose your temper > Waste time trying to reason with or convince your loved one of something > Try to take on every care responsibility yourself

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Care guide

Living with dementia

About Bluebird Care We’re Bluebird Care, and since 2004 we’ve been providing unforgettable, heartfelt care at home for families like yours.

Whether it’s a quick hello to see how your loved one is doing or a longer visit to help them get back on their feet after a fall – or even round-the-clock, 24-hour care – we can look after all of your loved one’s care needs. By highly-trained professionals who really know what they’re doing.

We’re also the UK’s largest Home Care provider, with over 200 branches. Each of which is locally-owned, so we can take the

To find out how we can help, give your local Bluebird Care office a call today.

We’d love to chat

time to get to know you and provide the best Care Expert to match your family’s needs.

We imagine you’re going through a lot right now. That’s why we’re here. To take the stress away, make things easier and help your loved one live life the way they want, where they want.

Because it’s good to be home.

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Living with dementia

Bluebird Care can help You want with all your heart for them to feel safe and at ease, but you know the difficulties they face. You know how frustrated they can feel. And you’re not always sure how to support them.

As experts in dementia care, we can help.

For over 20 years now, we’ve enabled people to feel stronger, healthier and happier at home. By focusing on everything that makes your loved one who they are –

When someone you love is diagnosed with dementia, it can feel overwhelming.

not just their symptoms – we can create a care plan that meets their individual health needs and gets them motivated to get out of bed each day.

All the while giving you the support and guidance you need as their carer or family member to stay mentally and emotionally strong.

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