You may know a person with some form of dementia, but what do you do if they are refusing care?
It could be that your parent or family member is in the early stages of dementia and has had a diagnosis of dementia or Alzheimer’s disease, but they feel they don’t need help. While it can be hard to hear that, it’s important to remember it’s actually quite a common response to the diagnosis.
Your loved one may find it hard to accept that they are now living with dementia. Also, they might be worried about the dementia getting worse and experiencing a loss of independence. Or it might be that they’ve not noticed the changes you’ve spotted, such as memory loss which is a common symptom of dementia.
Talk to your loved one
If your loved one is refusing care for their dementia, it can be helpful to talk to them about your concerns. While this can be worrying for you, it’s important to try to stay calm and be as supportive as you can when you speak together, as this will help them to remain calm. Your loved one could be feeling sad, angry and overwhelmed by the diagnosis, so listening to them carefully without judgement will allow them to open up and share some of their fears about dementia. Sometimes sharing how we’re feeling with someone who is acceptant and listens well can make us feel better. So, even if you feel you can’t do anything to help, listening in itself can be very helpful.
If you’re not sure how to approach the topic, you could plan a few pointers beforehand about what you’d like to say and how you could bring it gently into the conversation. For example, if you often talk to your loved one about what you’ve both been up to and they can’t quite remember, this could be a good opportunity to say you’ve noticed they have forgotten a few things recently and that you’re concerned. You may find they brush off your comment, so it could help if you have a few examples of what things they’ve forgotten recently ready to share with them.
Your loved one may be feeling powerless, so think about how you can help to give them choices and make some changes together. This might be asking them what would make them feel better. For example, they may prefer you to visit them in the morning rather than in the afternoon. Or they may now prefer to go for a walk with you, rather than chatting together at home. Being able to follow conversations can get harder for someone who has dementia, so if this is the case with your loved one, they might find walking less stressful.
You could also suggest helping by putting up post-it notes around the house together or setting reminders on their phone to help them remember to do things like their favourite activity or attend a doctor’s appointment.
You could also suggest that the GP might be able to help come up with some other ideas that will be helpful. If this is frightening for your loved one, you could offer to go with them to the GP to support them. If you decide to go to the GP together, it’s helpful to keep a diary and record all of the concerns you have so that they can have the best dementia care possible. This could contain details of days of the week, issues, and times that events have happened.
If your loved one refuses to see their GP and you become increasingly concerned for their wellbeing, you could ask your loved one if they would be happy for you to speak to their GP on their behalf. If this worries them, try reassuring them that GPs understand how to help dementia patients and that you want to get the best possible care for them.
Support for your loved one
Talking to other older adults who understand what it is like to live with dementia can be very supportive and help improve your loved one’s quality of life. It may also help them come to terms with their diagnosis.
Dementia Australia runs support programs across Australia to help people stay active and social. They can also help people who are caring for a loved one who has dementia.
If your loved one is struggling with accepting their diagnosis, counselling can help them to get a clearer understanding of dementia and to learn some strategies to manage their feelings. Dementia Australia also offers access to free counselling support which might be helpful for your loved one.
While Dementia Downunder offers a free support group for anyone in Australia affected by dementia.
They might also like to listen to music as this can have a calming effect or try something relaxing like yoga or meditation.
Care for Family also offers a variety of home care support for people with dementia. If you’d like to find out why it would be helpful to choose in-home care for dementia and when is the best time to look for support, visit our in-home dementia care services support page.