Supporting a friend or relative through any illness can be an opportunity to build a closer and more satisfying relationship. However, it can also be hard work and frustrating at times. And because of the nature of the disease, caring for someone with dementia can be particularly difficult.
“When a loved one is diagnosed with dementia, it’s normal for those close to them to feel anxiety, fear, grief and even anger at the unfairness of it all,” says our Director of Psychological Services, Dr Mark Winwood.
The rate at which the disease progresses can vary a lot, some people can maintain their independence and high quality of life for a considerable time after their initial diagnosis. At some point though, dementia will impact their work, social life and their relationships with family and friends. ‘The emotional upset, pain and sense of loss can be acute.”
Coping tips for family and friends
It can be hard to see the changes or difficulties that a friend, loved one or family member is experiencing as a result of dementia and it can frustrating not to be able to help more – but sticking by them and giving support is beneficial to everyone concerned.
- Make the most of the time you have while they are still lucid and able to make decisions.
- Listen to the advice of professionals and to ensure you have a clear understanding about what’s happening and will happen in the future.
- Make important decisions together now. Discuss the wishes of the person with dementia so that you know how to respond as the condition worsens.
- Tell other people so they know and understand what’s going on. Don’t be ashamed or embarrassed about dementia – it’s more common than you realise.
- Be positive and make the most of the time you have, together and with friends and family.
- Where conversation is difficult due to memory issues, try using family photos or favourite mementos to trigger memories. Sometimes remembering events from long ago can be easier for someone with Alzheimer’s than remembering what they’ve just eaten for lunch.
“As the condition progresses,” says Mark, “it may become very hard to cope with the changes and challenges you face, but try not to be critical or bossy. It can be very difficult when someone you love no longer recognises you or remembers your name, but try and behave as normally as you can. Show love and affection as you’ve always done. Remember you’re dealing with an adult you love and, whatever else may have changed, they still love you, even if they’re unable to communicate it any more. It is normal to feel angry and upset, so don’t be frightened to ask for help yourself.
Take care of yourself
It’s important for all carers to pay attention to their own needs first. To help you keep your mental and physical health strong, Mark has these tips for those caring for a loved one with dementia.
1. Speak up
You may be hesitant to speak out if your loved one upsets you or lets you down. However, honest communication will actually help the relationship in the long run. So don’t suffer in silence. Gently talk about how you’re feeling before pent-up emotions make it too hard to communicate with sensitivity.
2. Set boundaries
To avoid burnout and possibly even resentment, set clear limits on what you are willing and able to do. You can’t be there around the clock, so be realistic and set achievable tasks.
3. Stay on track with your own life
While some changes in your daily routine may be unavoidable while caring for your friend or relative, do your best to keep appointments and plans with your friends. You need to maintain your own support network.
4. Get help from others
Don’t be afraid to accept help from others. Joining a support group, talking to a counsellor or GP, or confiding in a trusted friend will help you get through this tough time. Talk to other carers. When appropriate, make use of respite care or other care services. Understanding your emotions and what you’re feeling can help you put things into perspective and feel less stressed and less isolated.