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As our population ages, dementia is becoming more common; in fact, it’s estimated that almost nine percent of people in Australia aged 65 and over had dementia in 2018. But while dementia mostly affects older people, it’s not an inevitable part of ageing; it’s a condition that causes a gradual deterioration in brain function, with Alzheimer’s disease being just one of many causes.
Giving personalised care to people with dementia improves their quality of life. Partners, family and friends are in a unique position to deliver this type of care, but that’s not to say that it’s an easy task - it requires a lot of love, patience and perseverance.
Getting support for you as a carer is essential, so we’ve put together a guide to help you understand what you can do and who you can reach out to for help.
The symptoms of dementia and how quickly they progress depend on the cause of dementia and these symptoms are different for everyone. Memory problems are often noticed first, but dementia also affects the ability to think and reason. It slowly robs people of their ability to communicate with others and perform everyday tasks.
Living with dementia can be difficult and frustrating at times for both the people who have it and those around them. This is especially true if challenging behaviours develop or your loved one’s personality starts to change and they seem less like the person you love and trust.
There’s currently a huge investment into finding a cure for dementia with Bill Gates pledging $100 million towards dementia and Alzheimer’s causes, but while the funding is a step in the right direction, dementia is an ongoing illness for which there is currently no cure. However, there are treatments available and ways to help manage the illness.
In some people, medicines can be taken for certain symptoms and to help delay the progression of the disease. Family and friends can play an important role by helping their loved ones maintain their skills and social life as much as possible; this can boost self-esteem and prolong independence.
Most people with dementia need some degree of assistance to live safely in their own homes. As dementia gets worse over time, more and more assistance is usually needed with everyday tasks and personal care. For example, your loved one may start to need help with things such as preparing food or getting dressed.
If you care for someone with dementia, you’ll know that there are good days and bad days. Try the following ideas to help minimise those bad days.
Arming yourself with information and getting some training will help you provide better care. It’ll help you stay safe, feel confident and enjoy the role of caregiver, and the benefits will extend to your loved one too.
Training is available for free through Dementia Australia in areas such as communication, activity planning and managing challenging behaviours. You can book training sessions through the National Dementia Helpline on 1800 10 500.
There’s also a Dementia Behaviour Management Advisory Service, which offers advice on managing challenging behaviours. Visit Dementia Support Australia or phone the 24-hour helpline on 1800 699 799.
Healthy eating and regular exercise are good for both physical and mental health. Try to fit in some physical activity that you can do together (such as walking to the local shops).
Participating in meaningful and enjoyable activities can help your loved one maintain some independence and help you engage with each other. Activities that don’t need much assistance (such as listening to music, dancing or gardening) are often good choices.
Try to tailor activities so that they meet your loved one’s skill level, and make sure it’s an activity they like - if they’ve never been an outdoors person, gardening may not be for them.
Effective communication does a lot to reduce anxiety, stress and agitation. You may need to adjust the way you interact and communicate with your loved one as their dementia progresses. Body language, visual cues and your tone of voice are just as important as using simple language.
It’s important that people with dementia have regular check-ups with their GP and dentist. Specialists and other healthcare professionals should also be involved in regularly assessing care needs.
There are some legal considerations when caring for someone with dementia and it’s best to get on top of these sooner rather than later. Start considering things like advance care planning (to ensure that your loved one’s wishes for care are being met) or power of attorney (to allow for legal and financial decisions to be made in their best interests).
Looking after yourself shouldn’t be an afterthought - you'll need support and assistance too
Looking after yourself shouldn’t be an afterthought or something that gets addressed only once you’re feeling overwhelmed. You’ll need support and assistance from doctors and other healthcare workers, as well as from friends and family.
Right from the beginning it’s best to have plans in place for you to have regular breaks from your caring role. Friends and family may be able to provide care while you take short breaks, but respite care may be needed for longer time off. Ask your doctor to provide information on setting up these arrangements.
You may also be eligible for government-funded or government-subsidised benefits, or assistance with other tasks such as meals, shopping and housework. If your loved one is under 65, you could receive support as part of the NDIS. If your loved one is over 65, the My Aged Care phone line - 1800 200 422 - can help you access services that meet your needs.
Emotional and practical support is invaluable when caring for someone with dementia. Local and online support groups are one of the best ways to share experiences and mutual understanding with other people in your situation. Call the National Dementia Helpline on 1800 100 500 for information about dementia carer groups. Carers Australia also offers support services on 1800 242 636.
If you’re feeling stressed or overwhelmed, you may benefit from counselling. Don’t feel guilty or let it get on top of you before you contact your GP to seek help.
If you’re confused about health insurance for your loved one, check out our article An over 50s guide to private health insurance.