DementiaConnect: A Guide to Dementia

What is Dementia?

A Guide to

Dementia A Guide to Dementia

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DementiaConnect

Provides a space where family and friend carers can come together in an open and welcoming format to share what they know, learn new skills, create larger support networks and build better self-esteem, confidence and social skills.

Acknowledgement

This booklet has been created from materials developed as part of the Verily Connect project to trial innovative solutions for rural carers of people with dementia and/ or memory problem. Led

by La Trobe University with funding from the Australian Government Department of Health and Ageing.

For Further Information

Information in this guide is an overview of the essential information you may require.

For further in-depth information we recommend visiting My Dementia Companion. mydementiacompanion.com.au The My Dementia Companion, CARER Tool is an online app that supports carers through the dementia journey by providing you with personalised, practical and quality guidance.

Contents What is Dementia?

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Overview of Dementia

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Alzheimers Disease

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Mild Cognitive Impairment

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Is it Dementia?

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The assessment process

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What questions should I ask the Doctor?

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Signs of Dementia

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Overview of the signs of dementia

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Sleeping difficulties

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Wandering

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Sundowning

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Thinking difficulties

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Memory difficulties

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Whats next after diagnosis

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Thinking about driving

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Making a will

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Managing personal and healthcare decisions

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Managing financial decision making

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A Guide to Dementia

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What is Dementia?

Learn about what dementia is.

What is Dementia?

Overview of Dementia

Learn about what dementia is

Alzheimer’s Disease Learn about Alzheimer’s disease - the most common form of dementia

Mild cognitive impairment

What is mild cognitive impairment (MCI) and how is it different to dementia?

A Guide to Dementia

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What is Dementia?

Overview of Dementia

What is Dementia?

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Dementia is a group of symptoms caused by a range of diseases that affect the brain.

Dementia can affect memory, thinking, mood, and behaviour. Dementia can make it difficult to perform everyday tasks. The person with dementia has no control over the changes they experience. They are not forgetting or having difficulty on purpose – brain disease is causing their changed memory and behaviour.

There are over 100 different types of dementia, each caused by a different disease. Alzheimer’s disease is the most common type of dementia. Other causes of dementia include Vascular dementia, Parkinson’s disease, Dementia with Lewy bodies, Frontotemporal dementia, and Alcohol-related dementia.

Dementia occurs more commonly in people over the age of 65. However, sometimes dementia can also occur in people in their 40s and 50s. When somebody under the age of 65 is diagnosed with dementia, it is called younger onset dementia.

Dementia causes progressive brain changes, which means that symptoms such as memory and thinking difficulties can increase over time. The rate of progression is different from person to person.

Overall, the experience of dementia is different for every person, even though people might sometimes have some similar experiences.

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What is Dementia?

Alzheimer’s Disease

What is Dementia?

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Alzheimer’s disease is the most common form of dementia.

Alzheimer’s disease causes damage to brain cells.

The disease creates plaques between brain cells and tangles inside the brain cells, and these plaques and tangles interfere with the brain’s functioning. Changes in brain function create the symptoms of Alzheimer’s disease.

Alzheimer’s is a slow progressive disease. It affects people at different rates and it changes people in different ways.

A person at the first stage of Alzheimer’s disease can do some things independently, like being able to work and drive. The person might struggle to remember things they have done recently or names of objects or people. They might forget what they have recently been talking about. They may feel depressed or have difficulty getting going. On average, this stage may last for about two years.

A person at the middle stage of Alzheimer’s disease might have problems thinking things through and they might get confused. The person may get lost. The person may find it difficult to make conversation. They may feel anxious. On average, this stage may last for about four years.

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What is Dementia?

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A person at the final stage of Alzheimer’s disease may find it difficult to speak and to swallow. They may struggle to use the toilet. They may not be able to walk.

On average, this stage may last about 1 to 7 years.

A Guide to Dementia

A Guide to Dementia

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What is Dementia?

Mild Cognitive Impairment

What is Dementia?

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Mild cognitive impairment is about having difficulty remembering and having difficulty with other thinking activities. People who have memory problems may start forgetting important information that they would normally remember easily. Mild cognitive impairment is often shortened to “MCI”.

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A person with MCI can still live independently. The memory and thinking difficulties a person with MCI are usually only noticed by those closest to them.

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MCI is diagnosed by a medical professional.

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MCI is found in 10-20% of people older than 65.

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Most people who have MCI do not develop dementia.

There is a slightly increased risk of developing dementia if a person has MCI. Every year, 5 to 10% of people with MCI develop dementia. This is a little higher than the general population rate of 1 to 2% per year.

Exercise, involvement in intellectually stimulating activities and participating in social activities can be helpful for people with MCI.

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Is it Dementia?

Find out about getting an assessment.

Is it Dementia?

The assessment process

What questions should I ask the doctor?

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Is it Dementia?

The Assessment Process

Is it Dementia?

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Specialist testing can take a while to complete because there might be several tests to do. It can also take time for test results to be returned to the doctor.

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During the assessment process for dementia, the doctor might also diagnose other medical conditions that the person has.

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The assessment will identify signs and symptoms for each person. It will also help to identify potential causes of symptoms.

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Sometimes people may not want to go to the doctor.

This could be because they are afraid that something may be wrong, and they don’t want to find out for sure.

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It may be helpful to encourage the person to have a physical check-up or to seek a review of their medication.

You might like to say that finding out a diagnosis can be useful for making more informed decisions.

There may also be treatments that can help alleviate symptoms. There is a lot of research being conducted about dementia, so there is always a possibility of new management strategies.

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Is it Dementia?

What Questions Should I Ask the Doctor?

Is it Dementia?

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The Cognitive Dementia and Memory Service (CDAMS) is a specialist service for helping to diagnose memory loss and changes in people’s thinking.

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CDAMS is a Victorian service, but there are other specialist services in other states. These services may be called “memory clinics”.

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Memory clinics are usually located within hospitals.

Dementia Australia or your local doctor or community health service can advise where your closest memory clinic is.

Memory clinics provide assessments of memory and make recommendations based on the assessment.

A doctor or community health service can give a referral for a memory clinic. A person can also refer them self.

Memory clinics provide support from a range of different health professionals. They can make a diagnosis and give information and support.

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Signs of Dementia

Learn about changes caused by dementia.

Signs of Dementia

Overview of the signs of dementia What changes are created by dementia?

Sleeping difficulties People with dementia may find it difficult to sleep

Wandering

Learn about wandering

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Signs of Dementia

Sundowning

Learn about “sundowning”: one type of behaviour change that can affect people with dementia

Thinking difficulties Learn about challenges to thinking for people living with dementia

Memory difficulties

Difficulties with memory can be a sign of mild cognitive impairment or dementia

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A Guide to Dementia

A Guide to Dementia

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Signs of Dementia

Overview of The Signs of Dementia

Signs of Dementia

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The effects of dementia can be subtle and they can be different over time.

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As dementia affects brain function, a person can have trouble with memory, thinking and communicating, and may experience changes in mood.

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A common sign is that people with dementia may have trouble remembering recent events. Although everyone can have the occasional lapse of memory, people with dementia may forget more often or forget in ways that are surprising.

People may forget the names of others they know well or they may forget how to find their way around places that are familiar. They may also have problems with language, like forgetting simple words and using the wrong ones in their place.

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A person with dementia may have difficulty doing a task in the right order, such as making a cup of tea.

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A person with dementia may not be aware of what day or time it is. They might not know where they are.

They can easily become lost and disoriented.

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Signs of Dementia

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They may often lose things. They may also find complex tasks difficult, such as being able to guide a car on the road.

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A person with dementia may not be able to manage finances, even if they have been good at doing this before. They may also have poor judgement, such as not wearing a jumper when it is cold.

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A person with dementia may have mood swings and behave out of character. They may have a loss of motivation to do things they used to enjoy and be less interested in spending time with family and friends.

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Signs of Dementia

Sleeping Difficulties

Signs of Dementia

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People with dementia may have trouble sleeping.

They may have: • Difficulty falling asleep • Waking often • Waking earlier than they want to • Restlessness during sleep, such as moving their arms and legs around.

Difficulty sleeping may mean that a person struggles during the day. They may have trouble paying attention or concentrating on tasks. They may feel irritable or sleepy during the day.

Trouble sleeping may make a person feel low in energy the next day. They may be more likely to slip or trip when moving around.

Insomnia (difficulty sleeping) can be increased by changes in routine. It may help to stick to a regular routine such as a regular time to go to bed and time to wake.

Environmental changes may also impact on sleep.

A cool temperature, no/low light, and no/low noise may make sleep easier.

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Signs of Dementia

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If a person has trouble sleeping, it can be useful to speak to a health professional.

There may be actions that can improve sleep, such as: • Having more light exposure during the day • Increasing physical activity during the day • Restricting time spent in bed

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Signs of Dementia

Wandering

Signs of Dementia

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Wandering is when a person with dementia leaves home but then becomes disoriented outside and he or she may have difficulty finding the way back home.

The person may become lost.

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Wandering is a quite common behaviour change for people with dementia.

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People may wander if they recently moved house or are on holiday - they can become confused due to the different location.

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People with dementia may set out on a trip with a clear purpose, but then they can forget where they are going halfway through the journey.

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Sometimes a person may leave the house because they feel in need of burning off a bit of energy, stretching their legs, or feeling a desire to exercise.

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People may head outside because they feel anxious or restless. They may be in pain and wish to ease it by walking. Or, they may have a habit of walking every day and wish to continue this tradition. However, during the task they can become disoriented and have difficulty finding their way home.

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People with dementia may become disoriented time to time and so they may set out on a journey to search for someone from their past, such as a child or a parent or a partner. Or, they may think they have a job to do from their past, such as going to work or picking up the kids from school. Once outside home a person living with dementia may be even more confused, as the surroundings do not match up with the scene from the past in their mind’s eye.

People may also sometimes wander because they are bored and taking a walk provides an enjoyable distraction. However, as mentioned before, the person may then become disoriented and have difficulty returning home.

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If a person is wandering, a first step can be to keep a record of when they are wandering. Is there a pattern to it? You might be able to identify a trigger to the wandering and then taken action to remove the trigger.

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Ask if the person is in pain or discomfort or feeling ill. Perhaps suggest that the person has a check-up with their doctor.

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See if you can remove triggers to wandering.

For example, don’t leave keys or bags lying about near the doors.

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Signs of Dementia

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Sometimes it can help to put a Stop Sign on the inside of doors. If wandering is a big problem, you may consider locking doors or putting an alarm on a door.

It could be helpful to assist a person living with dementia to be easily identified. For example, ask the person to wear a bracelet with their name, home address, and contact telephone number or wear a Medic Alert bracelet with a contact telephone number.

Name-tags can be sewn into clothing. Alert neighbours and local shop keepers that the person can sometimes become confused and disoriented and ask them to contact you if they notice that the person is distressed.

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Make sure that a person living with dementia has plenty of opportunities for exercise and walking if they enjoy this.

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Perhaps there is space to walk about in an enclosed back garden? You could go for a walk together or ask a friend or family member to walk with the person.

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Signs of Dementia

Sundowning

Signs of Dementia

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Sometimes people living with dementia can have behaviour change called “sundowning”, because it tends to happen in the late afternoon or early evening.

In the late afternoon or early evening, people living with dementia may become anxious, agitated, aggressive, or confused. Or, if a person already experiences some of these symptoms they may be heightened at the end of the day.

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Sundowning behaviours can differ from person to person.

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During sundowning, a person living with dementia may be more likely to pace, move around aimlessly, or call out and yell.

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During sundowning, a person may experience visual or auditory hallucinations. A visual hallucination is seeing something that other people cannot see. An auditory hallucination is hearing something that other people cannot hear.

Hallucinations are experienced as highly realistic by the person experiencing them. They can be frightening, or ordinary, or less often, pleasant.

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Signs of Dementia

Thinking Difficulties

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Dementia can affect thinking abilities in many ways.

For example, people with dementia may find it harder to pay attention and concentrate on tasks. They may have difficulty doing crosswords and dealing with money. They might find it difficult to make decisions.

When dementia becomes more severe, people can have difficulty doing familiar tasks.

Even activities that seem simple, like getting dressed or making a cup of tea, can become difficult, because a person may muddle up the order in which they try and complete the task or they may not know what action to take next.

Dementia can affect people’s orientation to place, time, and other people. This means that sometimes people with dementia can have difficulty finding their way, even in places they are familiar with.

They may become confused about the time of day or the date. They may have difficulty recognising people, even people they have known for a long time.

A person’s ability to drive can be affected by dementia. For example, a person with dementia may forget the meaning of road signs. They may have difficulty judging distance and could become easily distracted or agitated.

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Signs of Dementia

Memory Difficulties

Signs of Dementia

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Problems remembering recent events or recently learned information are often first signs of both mild cognitive impairment and dementia. For example, a person might forget what they did the day before or they might repeat a question a short time after having asked it.

Although everyone can have memory lapses from time to time, you might notice that memory problems are occurring more frequently in a person with dementia and the person has more difficulty remembering things than they used to.

Memory loss for a person with dementia gets progressively worse.

Memory loss can make it difficult to do everyday tasks. Memory difficulties can become very severe. For example a person may forget where they live or how to dress or wash themselves.

There are things you can do to help make everyday tasks easier for a person with dementia. For instance, you could support the person to make a cup of tea by placing all the items they will need on a bench in front of them.

Put pictures on cupboard doors to show what is in the cupboard. Make signs with simple instructions to help a person living with dementia to use appliances like the kettle or microwave.

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Signs of Dementia

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Currently, there is a lack of agreement about the causes of sundowning and best actions to ease the effects of sundowning.

You are recommended to seek further personalised advice from your local health professional. You could try gradually adding artificial light as daylight wanes, minimising loud noises, and sticking to a regular daily routine.

People living with dementia can become easily fatigued and they may need to rest or sleep in the afternoon. Resting in the afternoon may reduce sundowning behaviours. Playing soft music that the person enjoys may also help them relax if they become agitated.

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What’s Next After a Diagnosis?

Information to help with financial and legal issues.

What’s Next After a Diagnosis?

Thinking about driving

Consider whether a person living with dementia should drive

Making a will

Things to know when making a will

Managing personal and healthcare decisions

Information about appointing someone to make personal and health care decisions

Managing financial decision-making

What is a power of attorney?

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What’s Next After a Diagnosis?

Thinking About Driving

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You may find driving to be an automatic activity, but it is a complex task that involves detailed thinking processes, physical skills and fast reaction times.

A loss of memory, a lack of attentiveness, vision problems, and changes to perception, which can be caused by dementia, are likely to affect a person’s judgement and ability to drive safely.

Sometimes, lacking confidence behind the wheel or getting confused about familiar directions can be among the first hints that a person has dementia.

Other times, problems with driving might occur much later, after receiving a diagnosis.

All drivers are required by law to inform the local licensing authority (e.g. VicRoads, Service NSW, Service SA) about any medical conditions that affect driving, including dementia.

The licensing authority will ask the driver’s doctor to make an initial assessment of the driver’s medical fitness. A formal driving assessment, completed by a specialist occupational therapist, may also be required, to work out if the person is legally allowed to continue to drive.

Because the condition of dementia involves a gradual decline in cognitive and physical ability, it is highly likely that a person with dementia will need to stop driving at some point.

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Giving up driving may also change a person’s usual role in the family – for example, if the person with dementia was the person who did most of the driving, this can have a dramatic effect for other family members.

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Another family member may need to take up responsibility for doing the driving and if this person is already providing care for others, this can increase that person’s caring duties.

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Friends and family can assist by providing the practical assistance of driving a person with dementia to appointments and activities that the person needs and wants to do.

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Keeping up social connections is important for people with dementia, especially if they can no longer drive.

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Giving up driving can be a challenging situation. It can mean that a person with dementia is reliant upon others to assist them in getting about; this can result in isolation and dependency upon others.

Raising concerns about a person’s ability to drive can be a challenging discussion. It may be easier to discuss when everyone is calm and relaxed, rather than during or after a driving incident.

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What’s Next After a Diagnosis?

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It could be good to discuss driving after a change in health status, or diagnosis, or a change to medication. Short but frequent conversations may be better than longer emotionally-charged talks. Your doctor may be able to support you in having a discussion about driving.

Even though it is likely that most people will need to stop driving at some point as they become older, it can raise feelings of loss and decline. However, for some people stopping driving means less stress and worry about safety.

Assist the person with dementia to use alternative sources of transport such as buses, trains, or taxis, if they are available. Some local councils provide community transport. There may also be local volunteers who are available to provide transport.

If home delivery of services such as groceries and medical prescriptions is available, this can assist people with dementia who are no longer able to drive.

If the person with dementia shouldn’t be driving, don’t make car keys easily accessible to them. More help and support in helping a person to stop driving can be found at Dementia Australia and your local licensing authority (VicRoads, Service NSW, Service SA)

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What’s Next After a Diagnosis?

Making a Will

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A will is a legal document that outlines how the will-maker would like their estate (their belongings) to be distributed once they die.

After a person has been diagnosed with dementia, they may still be able to make a will, or change one they already have. It depends on whether they understand what it means to make a will and that they understand what they own.

They also ought to understand who might be expecting to be listed in the will and they know why or why not they will leave their belongings to these people.

A medical professional can help to determine if the person with dementia has the capacity to make a will.

You can support the person with dementia to make a will using a Will Kit, however it is advisable to receive help from a legal practitioner. A legal practitioner can help the will-maker work out what they own, and what is included in their estate.

There are a range of people and services who can help with making a will: Dementia Australia, a private solicitor, a community legal service, or a government service (e.g.

Public Advocate or State Trustee). There is normally a fee when making a will.

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What’s Next After a Diagnosis?

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Another important thing to think about when making a will is choosing an executor – this person has the job of distributing the estate after the will-maker dies.

The person with dementia should check that all their important documents, such as mortgage and financial statements/papers and insurance policies, are as they want them to be.

The person living with dementia should make sure that the person they have appointed to manage their will knows where their important documents are kept.

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What’s Next After a Diagnosis?

Managing Personal and Healthcare Decisions

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As dementia progresses, a person with dementia may reach a stage when they are no longer able to make decisions for them self.

While the person still has the capacity to make decisions, they can choose to appoint someone to make decisions on their behalf if they lose the ability to do so in the future. The appointed person is called a “substitute decision maker”.

It is important to make plans and decisions, and appoint decision-makers early on – the person with dementia must be actively involved in the plans and be legally competent to make decisions.

Plans need to be made early so that the person living with dementia can say exactly what they want and who they wish to give decision-making power to.

Somebody who is appointed to make personal and health care decisions on the behalf of someone else is called an “enduring guardian” in New South Wales and South Australia. In Victoria, the person is called a “medical treatment decision maker”.

An enduring guardian can consent to, or refuse, treatment on behalf of the person with dementia.

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What’s Next After a Diagnosis?

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An enduring guardian can also make other decisions about the person’s health care such as which doctor they see, whether to receive home or community support services, and being assessed for a residential aged care facility.

While the person with dementia still has the capacity to make decisions, they can complete a document called an “advance care directive”, which outlines their preferences for medical treatment in writing.

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The enduring guardian uses the written advance care directive to make decisions according to the wishes of the person with dementia.

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Because life is unpredictable, it is a good idea for everyone to have an advance care directive.

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What’s Next After a Diagnosis?

Managing Financial Decision-Making

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As dementia progresses, a person with dementia may reach a stage when they are no longer able to make decisions for them self.

While the person still has the capacity to make decisions, they can choose to appoint someone to make decisions on their behalf if they lose the ability to do so in the future. The appointed person is called a “substitute decision maker”.

When planning ahead, it is important to make plans, decisions, and appointments early on – the person with dementia must be actively involved in the plans and be legally competent to make decisions.

Plans need to be made early so that the person living with dementia can say exactly what they want and who they wish to give decision-making power to.

An enduring power of attorney is a legal arrangement that nominates a person to act on behalf of another person for making decisions and handling financial matters if the person cannot do this for them self.

A substitute decision maker needs to be appointed by the person with dementia while they are still legally competent to make this appointment.

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Enduring power of attorney is the term used in New South Wales, South Australia, and Victoria, but different terms are used in some of the other states of Australia.

A person appointed enduring power of attorney has responsibility for managing property owned by the person with dementia, pension or superannuation payments, and shares and money.

Because life is unpredictable, it is a good idea for everyone to have an enduring power of attorney.

There are a range of people and services who can help you with financial issues: Dementia Australia, Carer services, Centrelink, your local back manager, or the Office of Public Advocate in your state.

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For Further Information

Information in this guide is an overview of the essential information you may require.

For further in-depth information we recommend visiting My Dementia Companion. mydementiacompanion.com.au The My Dementia Companion, CARER Tool is an online app that supports carers through the dementia journey by providing you with personalised, practical and quality guidance.

dementiaconnect.au