Living with or caring for someone who has Alzheimer’s can be a challenging and emotionally-draining experience. It’s upsetting seeing someone you know, love and care for experiencing Alzheimer’s, especially in the severe stages of the disease, when they may not recognise you any more and their personality may change substantially.
The symptoms of Alzheimer’s
The symptoms of Alzheimer’s gradually progress over the years – typically over a seven to 10 year period. People are affected in different ways but, in the early stages, the part of the brain that controls memory and speech starts to decline, causing symptoms such as:
- memory problems and forgetfulness
- mood swings
- speech problems
As the disease progresses, people may begin to have difficulty remembering things they’ve recently done or should be doing. Problems with language and speech may start to develop, as well as symptoms such as:
- obsessive or repetitive behaviour
- disturbed sleep
- seeing or hearing things that aren’t there (hallucinations)
- believing things that are untrue (delusions)
- thinking you’ve done or experienced something that hasn’t happened
The effect on friends, family and carers
As with any disease, hearing the news that a friend or family member has Alzheimer’s can be a terrible shock.
“When a loved one is diagnosed with Alzheimer’s, it’s normal for everyone concerned to feel anxiety, fear and anger at the unfairness of it all,” says chartered psychologist Dr Colin Gill.
Even though the long-term direction of the disease is known, the rate at which Alzheimer’s progresses for individuals varies a lot. Many sufferers can maintain their independence and high quality of life for a considerable time after their initial diagnosis.
At some point though, it’s likely to have an impact on a person’s ability to work, on their social life and their relationships with family and friends. When that happens, it can be very hard for other people to cope with.
“As the disease progresses, the challenges of Alzheimer’s may change but the emotional upset, pain and sense of loss is always acute and can be really hard to tackle,” adds Dr Gill.
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 Alzheimer’s and frustrating not to be able to help more – but sticking by them and giving support is beneficial to everyone concerned.
It’s also important to make use of the time you have, when they may still be lucid and able to make decisions, as Dr Gill explains.
- In the first instance, accept the truth, listen to the advice of professionals and be honest with yourselves; it’s essential you’re clear about what’s happening and will happen in the future.
- Make important decisions together now, whilst you still can; ensure you understand the wishes of the sufferer and have discussed what will happen and how you should 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 Dr Gill, “it may become very hard to cope with the changes and challenges you face, but try not to be critical or bossy.”
Take advice from experts, talk to other carers and, when appropriate, make use of respite care or other care services.
It can be very difficult when someone 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.
If you have any questions about the issues raised in this article, then you can ask our panel of experts.
Alzheimer’s Society - alzheimers.org.uk
Alzheimer’s Research UK - www.alzheimersresearchuk.org
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