CARING SATIONS
① Living experience of dementia
Gwenda's Story
Gwenda Darling is a First Nations Palawa woman who was diagnosed with younger onset frontotemporal dementia in her 50s. She is an active dementia advocate, a frequent participant in dementia research, and is a key member of the Aged Care Council of Elders.
When Gwenda Darling was diagnosed with younger onset behavioural variant frontotemporal dementia at 59 years old, she had a very limited understanding of what it meant, beyond just memory problems.
One of the first signs that something was wrong was after her family and colleagues had started to notice significant changes in her personality, stating that she appeared to “not care” anymore.
A seeming lack of empathy, a key skill needed for her job as a social worker, started to make people around her seriously concerned. Despite initial denial, she finally decided to seek out a diagnosis after her family raised that they had indeed noticed a change in her personality.
Gwenda’s journey to understand her diagnosis has not been an easy one. After finally seeking out a diagnosis, she had medical professionals who casually and dismissively informed of her dementia diagnosis.
The dismissive attitude from doctors she faced meant Gwenda turned to Google and online community resources to look for information on what her diagnosis meant. Overwhelmed with the lack of support and the weight of her diagnosis, she spent three months as a recluse in bed and gradually lost her ability to read, write and talk.
However, thanks to her supportive family and friends, Gwenda was able to regain meaning and hope in her life. Small supportive actions like friends occasionally visiting her to check in, and through gentle encouragement to pick up past hobbies she had loved, like tending to the roses and fruits backyard, meant she eventually learnt to live on for her loved ones.
She since has found strategies to cope including engaging an occupational therapist which she found indispensable to relearning essential skills she had lost. This enabled her to reframe her life and routine in a way that would work for her. With the help from her occupational therapist, Gwenda was able to learn how to speak without stuttering and how to write and read in a new way that worked for her.
Gwenda is a fierce advocate in spreading understanding amongst the community of the many aspects of dementia. One of her primary goals is to have people understand that those living with dementia do not have ‘behaviours’. People living with dementia have ‘unmet needs’ and those unmet needs can manifest in responses such as aggression etc.
Therefore, rather than judge the ‘behaviour’ she stresses it’s important to investigate the source - this could be pain, being hot or cold, the need for food or hydration. Awareness of the unmet needs amongst carers and the comm-unity not only assists the person living with dementia, but will minimize inappropriate or anti therapeutic responses, and create a more tolerant and aware society.
If there is one thing that Gwenda would like others to know about is that no two people with dementia will have the same experience, and no two days will look the same for some- one with dementia.
② Overview
What are dementia-related responses?
It is important that any terminology used around dementia-related actions remains non-judgemental as these actions are often misinterpreted as intentional instead of being recognised as a symptom of dementia.
People with dementia may experience changes to how they feel and act, otherwise known as dementiarelated responses or actions. Dementia-related responses may also be referred to as changed behaviours or criminal risk behaviours which refers to actions that are viewed as socially inappropriate or places a person with dementia at risk of being criminalised.
It is important to stress that these terms refer to how others perceive these dementia-related actions and do not mean the person intended to act this way.
These responses may include aggression, anxiety, depression, hallucinations, socially inappropriate actions, impulsiveness, and wandering.
The occurrence, frequency and severity of these responses vary depending on the type and stage of dementia progression, and the person’s personality and history prior to dementia onset. Importantly, not everyone with dementia will experience changed responses and, if they do, it may only happen now and then.
Some types of dementia, especially those that affect younger people, may lead to more noticeable changes since they don’t fit the typical image of someone elderly and frail.
While dementia-related responses can be tough on the person living with dementia, their carers and the community, it is important to remember they aren’t deliberate.
Addressing these dementia-related actions requires a personalised approach as there is no universal solution. Keeping a detailed record of possible triggers can be very helpful in finding effective strategies for handling them. It’s crucial to understand that their actions are reflections of their condition, and not of who they are.
Types of dementia-related responses
Certain actions can lead to situations that may lead to law enforcement involvement. This does not mean the person intended to break any laws or act insensitively or inappropriately. Rather, these responses are a result of their dementia and should not be taken as a reflection of their character.
Diminished judgement, impaired reasoning abilities, and increased impulsivity due to dementia can result in actions like traffic violations or even shoplifting.
These situations can lead to unwanted and distressing outcomes, like being restrained or arrested, moreso because these actions are often under-recognized in the general public as dementia-related.
Such issues are more common in specific types of dementia, like behavioural variant frontotemporal dementia, where nearly half of those affected might show one or more of these changed responses.
Examples of dementia-related responses from most to least common include: Verbal abuse
• Offensive or inappropriate language
• Threatening physical assault
• Entering a neighbours house
• Leaving rubbish on another property
• Excessive spending and/or gambling
• Decreased empathy or care at work
• Shoplifting or stealing from someone
• Hiding bank withdrawals
• Running a red light, speeding, or DUI
• Driving without a licence
• Touching, kissing, or hugging a stranger
• Inappropriate sexual advances
• Public urination
• Undressing in a public place
• Recreational drug use
• Illegal drug use
• Physical violence
• Being intentionally cruel to animals
• Not paying for services such as movie or bus tickets, or a restaurant bill
Public reactions to dementia-related responses
“They took my mum to the police station after she verbally abused some police officers. They asked her to make a statement but she didn’t really understand what was going on.
She was meant to go to court but it was dropped as I gave them some reports from her doctors to explain that she had no intention of verbally abusing the officers. She, medically, could not have stopped herself from verbally abusing them.”
Caregivers often encounter negative reactions to their loved ones with dementia, especially in public settings or when interacting with authorities. This is often because of a lack of understanding about how dementia can affect an individual's actions.
Newer caregivers may struggle to explain lesserknown symptoms of dementia or may feel unsure about how to advocate for their loved ones. This is especially true for younger individuals who may not fit what society believes to be the ‘typical’ image of someone with dementia.
Another caregiver shared: “You have individuals in their 40s, 50s, or 60s showing these symptoms, and they don’t look like someone who has dementia. People expect someone who is elderly and frail. But here’s a relatively young individual, looking fine and very assertive.”
Other negative reactions family members and people living with dementia have experienced includes:
• Hostile shop staff
• Being banned from local shops or social community venues
• Police involvement such as being followed and questioned, or being arrested and being charged with criminal offences.
It’s vital for family and caregivers to stay engaged and anticipate any needs or stressors. Collaborating with support services or other professionals to create strategies can help to maintain the safety and dignity for everyone involved.
③ Understanding changes in actions
Aggression
Verbal abuse
• Offensive or inappropriate language
• Threatening physical assault
Physical assault
• Physical violence
• Being intentionally cruel to animals
Up to one third of people with dementia living at home can occasionally become aggressive and hit out at other people or themselves.
Aggression refers to dementia-related responses that may appear verbally or physically hostile.
Verbal aggression may include offensive language, while physical aggression could involve hitting or pushing. Verbal abuse is especially prominent in certain types of dementia, including behavioural variant frontotemporal dementia and other subtypes of dementia that affect language.
It is important to keep in mind that aggression is usually not intentional. It may often occur due to unresolved health issues, feelings of confusion or fear, or another unmet need which could be something as basic as hydration.
Family members are often the most affected by aggression but may hesitate to report it due to concerns about how it reflects on their loved one. Not addressing aggression can lead to worsening situations and delays in getting support.
The best way to reduce aggression is to be proactive in creating a care and safety plan with help from professionals and support services.
Aggression (cont.)
“Her local social club that she loved ended up banning her from there because she was becoming so racist and so rude towards people, verbally.
I tried explaining this to them, that she has dementia, this is something that can happen, it can get quite aggressive. And they said, no, she’s too young, she doesn’t have dementia, she’s just rude. It was really difficult for me to explain it to people.”
• Speak calmly in a matter-of-fact way.
• Don’t try to argue or reason as this may escalate the situation.
• If the person is not in immediate danger, stepping out of the room and leaving for a short period of time may help to de-escalate the situation.
• Plan ahead and ensure you have safety strategies in place such as preparing a safe room for yourself in a lockable room with a phone.
• Attend carer education and training courses, or join carers support programs. These can help you to connect with professionals or others with similar experiences.
• Seek out occasional respite services.
General tips for caregivers Environment & Routine
• Minimise changes around their home to create a safe and familiar environment.
• Maintain a simple and consistent daily routine for the person with dementia.
• Identify and remove or avoid triggers from their environment – both in home and in public. This may include actively avoiding noisy or crowded places that may be overstimulating. Keeping a detailed written record can help with identifying triggers. It is important to be explicit when identifying the specific problem. For example, record 'swearing at strangers at public parks’ and not just ‘was aggressive in public’.
Seek professional advice
• Ask their doctor if there is an underlying medical reason which could increase irritability.
• A history of aggression or violence in the person living with dementia before the onset of dementia can be a factor in predicting dementia-related aggression. Professionals such as GPs or other support services can work together with you to develop strategies to reduce aggression and ensure the safety of everyone.
Disinhibition
Traffic violations
• Running a red light, speeding, or DUI
• Driving without a licence
Inappropriate actions
• Touching, kissing, or hugging a stranger
• Inappropriate sexual advances
Trespassing
• Entering a neighbours house
• Leaving rubbish on another property
Theft or stealing
• Shoplifting or stealing from someone
• Hiding bank withdrawals
Public indecency
• Public urination
• Undressing in a public place
Illegal drug use
• Recreational drug use
• Illegal drug use
Not paying for services
• Not paying for services such as movie or bus tickets, or a restaurant bill
Disinhibition is an early symptom in some subtypes of frontotemporal dementia and is seen in up to 75% of individuals with this type of dementia.
It is also present in other types of dementia, including Alzheimer's disease, but is less common, affect-ing up to 30% of individuals.
Disinhibition includes socially inappropriate speech or actions, such as making rude comments or engaging in risky actions.
These actions can stem from physical changes in the brain, environmental factors, or feelings of frustration or confusion. Again, it is important to remember that these actions are often unintentional and should not be taken as a reflection of the person's character.
Family caregivers often struggle to balance community involvement while avoiding potential issues. There are support services that can help caregivers to develop strategies to ensure the safety and dignity of everyone involved.
Disinhibition (cont.)
“My husband started taking newspapers from cafes that were for patrons. He didn't recognise realise that it was the wrong thing to do.”
General tips for caregivers
• Distract or lead the person away to a private place if responses happen in a public place.
• Encourage socially appropriate activities that the person enjoys, particularly any activities they have enjoyed prior to being diagnosed with dementia that will occupy their hands.
• Try to understand why it’s happening which can help with how to respond or find ways to prevent it from recurring. Potential causes include feeling uncomfortable due to temperature, tight clothing, pain, over-stimulation, being unable to see or hear properly. Creating a quick reference checklist may help you to identify the cause and support you.
• Keep calm and avoid shaming or overreacting. It is extremely important to keep in mind that the person living with dementia is not acting this way intentionally.
Longer term strategies
• Be proactive if taking on a carer role and plan ahead. This may include speaking with local police or staff at shops or venues the person with dementia frequently visits to explain in advance, and to provide your contact details in the event of a future incident.
• Where possible, any plans or strategies should be agreed upon in advance for the safety and dignity for everyone involved.
Seek professional advice
• Consider working with healthcare or dementia support service professionals to develop coping and de-escalation strategies.
• Check if there may be an underlying illness, pain, or medication side effect separate from dementia which may be having an impact. Asking for a medication review from a GP may be helpful.
Impulsiveness
Impulsiveness
• Excessive spending and/or gambling
• Decreased empathy or care at work
Individuals with dementia are more likely to show impulsiveness around finances and their work compared to the general public.
It is more common and severe in people with certain types of dementia, such as frontotemporal and some types of dementia that affect language and speech.
Impulsiveness may also sometimes be referred to as recklessness and refers to any unusual impulsivity around finances, or a person's work or career.
Financial impulsiveness may include responses such as developing new gambling issues, excessive donating, spending large amounts of money, or falling for scams. Professional impulsiveness may look like the individual is acting uncharacteristically unethically, without care, or without empathy at work.
Financial or professional impulsiveness is a common initial sign of some types of dementia, particularly with younger onset dementias. It is also often subtle and gradual enough to be dismissed as a normal change in personality. It may be a good idea to seek out a medical evaluation if you notice any unusual changes in personality.
Impulsiveness can often be difficult for the person living with dementia, their family, and their carers. Balancing freedoms of the individual with dementia while trying to prevent possible negative financial or professional effects can be difficult.
It might help to look beyond their actions and remember that these changes are because of dementia, and to engage with dementia support services to help develop personalised strategies to ensure the best outcomes possible.
Impulsiveness (cont.)
“My wife was terminated from her work because of many customer complaints about her rude and abrupt behaviour. It was like there was a flicking of a switch.
All of these things just started in a short space of time and they just escalated almost exponentially.”
General tips for caregivers
• Look out for signs of money problems such as trouble with paying, counting change, or with understanding a bank statement.
• A family member, trusted friend, or legal representative may want to check all bank statements regularly to watch for issues and step in if there are concerns. Proactive effort like his can help with preventing financial abuse or fraud.
• Discuss ways to manage spending such as setting up automated bill payments, auto grocery deliveries, and setting up spending limits on debit or credit cards.
Longer term strategies
• Plan ahead to manage affairs and finances such as by establishing a legal proxy, gathering important records documents into one place, or discussing advance care and financial plans.
• Establishing these procedures in advance in the early stages of dementia can greatly help family members as the dementia progresses as well as ensuring the person with dementia’s wishes are respected.
Seek professional advice
• Gently encourage the person to seek out a medical evaluation If you notice any uncharacteristic changes in personality, or in their actions around work or finances.
• If already diagnosed, check with a GP or other medical professional if there may be another underlying illness other than dementia, or ask for a medication review.
④ Tips & resources
Summary of tips for caregivers
General tips for caregivers Environment and routine
• Speak calmly, don't argue or overreact, and try to avoid shaming them.
• Take breaks from the caring role such as stepping out of the room if the situation is escalating, or seeking out respite services.
• Seek out carer education and training courses which can help you with tips and developing personalised strategies or plans.
• Consider attending dementia support groups which may provide practical tips and emotional support. These can be found both online on forums, as well as in person support groups or more informal dementia-friendly cafes.
• Try to understand why certain responses are happening. Keeping a written record or creating a quick reference checklist may help in supporting you to address these needs.
• Maintain a simple and consistent daily routine and minimise changes within the home.
• Ensure the individual gets regular exercise and sufficient rest.
• Encourage socially appropriate activities that the person enjoys, particularly any activities they have enjoyed prior to being diagnosed with dementia or activities that will occupy their hands.
• Calmly distract or gently lead away to a private place if responses happen in public.
• Identify and remove triggers from their environment and routine – both in public and at home. Keeping a detailed record may help.
• It may be helpful to add light, sound, or colour cues in the home to help orientate the individual, especially at night. There are many resources that can help with this including the Hack Care PDF.
Summary of tips for caregivers (cont.)
Seek professional advice
• Consider working with healthcare or dementia support service professionals to develop coping and deescalation strategies.
• Gently enourage the person to seek out a medical evaluation if you notice any uncharacteristic changes in personality or in their actions.
• Check if there may be an underlying illness, pain, or medication side effect separate from dementia which may be having an impact.
• Remember that a history of aggression or violence in the individual with dementia before the onset of dementia can be a factor in predicting aggression related to dementia. Consider disclosing this when seeking out professional support like with a GP or dementia support services.
• Consider seeking legal advice around plans to manage affairs and finances. For example, by establishing a legal proxy, gathering important records documents into one place, or discussing advance care and financial plans.
Plan ahead
• Plan ahead and ensure you have safety strategies in place.
• Remain engaged in their care to look out for any potential issues including finances or to mitigate physical altercations.
• Be proactive and consider speaking with local police or staff at regularly visited shops or venues to ensure understanding and to provide your contact details.
• Discuss ways to manage spending such as setting up automated bill payments, auto grocery deliveries, and setting up spending limits on debit or credit cards.
• A family member, trusted friend, or legal representative may want to check all bank statements regularly to watch for issues and step in if there are concerns. Proactive effort like his can help with preventing financial abuse or fraud.
List of helpful resources
General info and support
Dementia Australia / National Dementia Helpline
1800 100 500, or at dementia.org.au
A free and confidential 24/7 helpline that provides:
Emotional support and guidance, tips on navigating services and community support programs including legal guardian- ship, and advice on accessing government support such as Carer Gateway, NDIS, and behaviour support services.
Dementia Support Australia
1800 699 799, or at dementia.com.au
Nationwide dementia support with 24/7 access to trained dementia consultants.
Services include: frontotemporal dementia support, childhood dementia support, dementia respite education, behavioural support (DBMAS), and carer wellbeing and respite programs.
Carers NSW
02 9280 4744 or carersnsw.org.au
Seeks to improve the lives of caregivers by providing information, education, and resources. Supports any individual who provides care to a family member or friend who has dementia. You do not need to be the sole or primary carer to be considered a carer.
Dementia Cafes and Support Groups
Dementia cafes provide dementia-friendly spaces for both people with dementia, their families and their caregivers to socialise with others with similar experiences.
These are commonly facilitated by local councils and dementia-related organisations including Dementia Support Australia.
Online resources
Are many organisations that have helpful resources including:
• Dementia Australia
• Dementia Support Australia
• Carers Australia / Carers NSW
• NSW Ageing and Disability Commission
• Department of Health and Aged Care
• NDIS (for younger onset dementia)
• State and local governments often have dementiaspecific resources, helplines and events listed on their website.
Specific helpful resources:
A Guide for Family Carers: Dealing with Behaviours in People with Dementia (PDF)
A comprehensive guide for family carers that provides helpful strategies for addressing dementia-related responses.
De-escalation of severe responsive behaviours webinar (Dementia Australia YouTube)
Hack Care: Tips and tricks for a dementia-friendly home. (Digital publication version on Issuu) This e-publication provides tips regarding home environment changes using IKEA furniture, as well as general tips and tricks.
List of helpful resources (cont.)
Dementia-related domestic violence Respite care
National Domestic Violence Service
1800RESPECT (1800 737 732)
NSW Domestic Violence Line 1800 656 463
NSW Ageing and Disability Abuse Helpline 1800 628 221 (Mon-Fri, 9am-4pm)
If you suspect abuse or neglect of an elderly person, including people with dementia or an elderly carer of someone with dementia.
If you are in immediate danger, call 000.
To find respite care in your area, contact:
• National Dementia Helpline 1800 100 500
• My Aged Care 1800 200 422
• Veterans Home Care Assessment Agency 1300 550 459
• The Carer Gateway 1800 422 737
• For those with younger onset-dementia, you may be able to receive respite care through the NDIS at 1800 800 110
Consider contacting your local hospital as some do provide both short term planned and emergency respite care services.
References
Alzhiemer’s Society. (2021). Aggressive behaviour and dementia. Alzhiemer’s Society. https://www.alzheimers.org.uk/about-dementia/symptomsand-diagnosis/symptoms/aggressive-behaviour-and-dementia
Alzhiemer’s Society. (2021). Preventing and managing aggressive behaviour in people with dementia. Alzhiemer’s Society. https://www.alzheimers. org.uk/about-dementia/symptoms-and-diagnosis/symptoms/ preventing-aggression
Alzheimer’s Society. (n.d.) Loss of inhibitions and dementia. Alzhiemer’s Society. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/ symptons/losing-inhibitions
Boden, S. (2023). As some families learn the hard way, dementia can take a toll on financial health. NPR. https://www.npr.org/sections/healthshots/2023/05/12/1175141042/as-some-families-learn-the-hard-waydementia-can-take-a-toll-on-financial-health
Boden, S. (2023). A loved one’s dementia will break your heart. Don’t let it wreck your finances. NPR. https://www.npr.org/sections/healthshots/2023/06/13/1181463214/dementia-financial-problemsprotection
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