Supporting and caring for someone with dementia

Helping to support someone through any condition can lead to a closer and more fulfilling relationship.

However, due to the difficult symptoms of dementia, caring for someone with this disease can be both physically and mentally exhausting. Dr Mark Winwood, our Director of Psychological Services says that it’s common for those close to someone diagnosed with dementia to feel a mixture of emotions although it affects different people in different ways.

Some people with dementia are able to live an independent and full life for some time after being diagnosed, as the speed with which a person deteriorates can be different from one person to the next.  However, as the condition progresses, the person’s needs and abilities change and this will affect the way they relate to family and friends, along with their work and social life.  Those close to someone with dementia can feel saddened and upset at the ‘loss’ of the person they knew.

Ways for friends and family to cope

It can be very difficult to see your friend, loved one or family member struggling with things they used to be able to do and it may leave you feeling helpless.  However, the best thing you can do for them is be there and give your support.

  • Do ensure that you take the time to be with them as much as possible during the early stages while they are still able to make key choices.
  • Learn as much as you can about dementia so you understand the current symptoms and how they will progress
  • It is important to know the wishes of the person with dementia so you are clear which path to take when their condition deteriorates.
  • Don’t hide the fact that the person you care about is suffering from dementia, other people need to understand what is going on.
  • Try and stay positive and focus on the things the person can still do and make the best of your time together
  • Most dementia sufferers can remember events from their past much more readily than what they did yesterday so use old photos or keepsakes to prompt a memory.

Mark says that when things become tough try and focus on some of the positive aspects of supporting someone.  Think about your relationship with them, your fondness for them and the fact that you are there for them and helping them enormously.  This can be very difficult to do when the person you are caring for doesn’t even remember your name but try to behave normally because, even when they can’t tell you, the person you care for still feels the same about you. However feeling emotional or angry is a normal reaction, so don’t be afraid to ask for help and support if you need it.

Go easy on yourself

When you care for someone it’s all too easy to forget your own needs.  You must keep strong both mentally and physically.  Mark suggests a few ways for you to look after yourself:

  • Don’t suffer in silence – Bottling up your feelings, or not taking the time to address issues with your loved one is not healthy.  Gently speaking about your feelings should help your relationship
  • If you care for someone all day every day then you will exhaust yourself and possibly even resent being there. Be realistic and clear as to what you are able to achieve.
  • Of course, your own life will change as you care for your loved one but it is important for your own wellbeing to see friends and keep a support network for you.
  • Ask for help – caring for someone with dementia is tough. Don’t be afraid to ask for help and support.  Involve family and friends to give you a break and reduce some of your stress, alternatively a voluntary organisation or your GP may be able to help find some respite care.  Talking to other carers about your experiences can also be useful as they understand what you are going through.  If you feel that you’re really struggling then try to talk to someone as soon as possible.

Some further reading and useful links:

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8th Sep 2019
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A dementia specialist who spoke to our women's group recently said this. Imagine you are in a room with two bookcases. One is solid oak and fixed to the wall, the other a flimsy flatpack. On the first are the subjects emotions, happiness, sadness etc. On the flatpack are their experiences - people they were with, places they have been and so on. Experiences are stacked on these bookcases - oldest at the bottom, most recent at the top. So, the flatpack, being less stable will wobble and the most recent experiences will fall off, although in distant childhood remain secure. The recent activities and people are lost to the sufferer of dementia but on the secure bookcase are stored the feelings they experienced. So they may not remember that their son took them out this morning, but they will remember that they had a good time. This has changed my aunt's way of addressing my uncle when she visits him - instead of asking "What did you do this morning?" she will ask "Did you have a good time this morning?" and he remembers whether he did
5th Dec 2018
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My partner was diagnosed with vascular dementia and Alzheimer’s 5 years ago. I was pleased (for me?) that we knew what was wrong, and for the first year we were offered a lot of support, though as his symptoms were not severe this was not much use (for him). As the years have gone he’s changed, until now he sits in the lounge chair, watching tv, and his memory is very limited. I retired to look after him, and whilst he has a carer come in for half an hour for three days a week, I am now trying to expand this as i am not able to shop within this time. I have become very depressed and stressed because of this - I try to get out as much as possible, but as my partner has other medical problems, I just worry. It’s a nasty condition, and the Alzheimer’s society have been great, as has our doctor, but our retirement never happened, and I’m so sorry.
5th Dec 2018
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It is a really nice blog. A person with dementia needs your care and support. you should understand his emotions that what are the conditions they are facing.
Margaret Hart
4th Dec 2018
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Anybody who has done this or seen someone close to them do it will know just how hard it is and of course everybody has an opinion even if they know nothing about it.. The most important word I think is Patience and then understanding. Ive been involved both with in laws and as a general volunteer where we ran a day Centre one day a week and we had two people to each client, a full kitchen to make drinks and meals and at least full time nurse. We ran that for about a year but then the council closed it down as we did not have a disabled toilet but neither did we have any disabled clients. It was a terrible blow but we couldn’t change their minds. I was the only one in the family who had the stomach to deal with the way my father-in-law was in hospital and washing him or feeding him and the nurses just ignored it. He was double incondinent and not eating. It had to be done and I did it but I resented the lack of help, however he did not live long like it so I did what I could but he would have been better off at home but my mother in law wouldn’t try it. You can’t rush into decisions as there is a lot to do and some people run away or get violent but the real person has gone as the brain is dying.
However please help to treat people as human beings - it could be you one day.

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