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Care & carers

Dementia - what do the carers want?

(35 Posts)
kittylester Wed 20-Apr-16 07:30:11

As some of you know, I am on the committee of our Community Managed Library. I am hoping to set up something for dementia sufferers and their carers (especially the carers!!) to run while the library is open. We already have a luncheon club in the village (once a month) and a dementia cafe (twice a month.)

If you are caring for someone with dementia, what would help you? What would you consider it worthwhile making the effort for?

Nana3 Wed 20-Apr-16 08:08:13

My Mum used to love reading and went to the library every week. When she gave up going I gave her books. She gave up reading altogether when her dementia got worse.
The only time she went out of the house without me was to a council run day care centre. I'm thinking if your library could connect with a centre like that in some way, they might also have ideas about what would be useful. My Mum loved going there.
Nothing is done in her care home connected to reading.
My friend reads the local paper to her Dad, he enjoys that.
Good luck, hope the ideas come for you.

grannylyn65 Wed 20-Apr-16 08:10:30

Where are you!!??

Grannyknot Wed 20-Apr-16 08:17:57

Hi kitty there is a new group in my local area for dementia people and their carers. I was listening to someone talking about it recently and I thought "Ooh, what a good idea" - the group has some entertainment or activities for the dementia people (e.g. singing) but then at the same time they also have a speaker for the carers (not necessarily about dementia, on this occasion it was a local author). So the objective is that both groups have some relaxation/activities in the same place.

kittylester Wed 20-Apr-16 08:20:11

Leicestershire - grannylyn, why?

Thanks for your input Nana3.

kittylester Wed 20-Apr-16 08:21:40

GK, that's what we are aiming for.

Parsleywin Wed 20-Apr-16 09:06:46

I have tried to keep reading going for a family member with dementia. Novels became impossible as he lost the ability to follow a storyline, but we've found that books of facts, probably aimed at 8-10 year olds, are a huge success and he gets absorbed. The info is in bite sized pieces, and there are lots of illustrations. Subjects like astronomy and the planet are great for him. The books are cheap and plentiful in the high street discount shops. We keep two or three out at a time to enjoy and rotate them from our stash. One of the very few 'benefits' of his dementia is that the books are new and interesting each time! I do appreciate that the subject matter wouldn't hold everyone's attention, but the principle might help others.

Good luck with the project kittylester.

Teetime Wed 20-Apr-16 09:11:18

Hello kittylester I hope things are well with you. As you know I have done a lot of nursing in the community and there is a desparate need for what you are doing so I'm sure it will take off. My observations of couples in this situation is that card games and other types of board games possibly remembered from times past go down very well so perhaps an afternoon of games with some tea thrown in might be some light relief.

Good luck with it all- let us know how its going.

Lona Wed 20-Apr-16 09:30:24

kitty flowers Good luck, you're a gem!

kittylester Wed 20-Apr-16 09:55:12

I'm not really Lona! grin

I have mentioned before that someone DH was at Uni with has dementia and his poor wife is really struggling to cope - they have no children and his brother has dementia too so his family are tied up with their own issues and no help. His wife is the gem. sad

The library committee are trying to entice people through the door and we have lots of stuffing on for children and their carers but little for anyone else.

Retrolady Wed 20-Apr-16 10:25:51

Both my parents had dementia and both found reading novels difficult. However, magazines with short stories e.g. My Weekly, People's Friend. They produce twice yearly books as well.

What about a Craft Corner - knitting and crochet are something which people fine difficult when they have dementia and they might like to produce something small. I'm thinking maybe those Innocent Smoothie hats ... Depends on the level of dementia they are living with, of course, but then all activities do.

I'd also stress not to forget men ... my dad used to be able to enjoy Reader's Digest - similar point: short articles.

Newspapers - including ones like Metro and that new one (forgot name, sorry) because it doesn't have masses of pages and cuts stories down to the bare necessities.

Plenty of magazines - easy to pick up and put down and plenty of opportunity for chat, particularly the gossip type ones.

Once you know who is coming, maybe hobby magazines - again, for men (no, no those ... I'm thinking fishing, Countryfile etc.

Also something for carers - a chance to browse among the novels, access the internet etc'

Plus, of course, cuppas all round and awareness of the need to adapt/change activities depending on the users and how they feel on the day.

Also music, quietly, in the background. Some people with dementia find silence, or conversely background chatter, difficult to deal with. Music could be a distraction and something to occupy the mind if they don't want, or can't get involved in the other things.

This is a fantastic idea. Sending you huge Well Dones and luck with it all. Wish you were near me (Somerset?). Even though my parents are now no longer with us, I'd love to get involved.

Not staging a takeover bid, honestly, but my parents were ill for many years and I now volunteer with the Alzheimer's Society, but I'm still learning - dementia is so unpredictable and no one person is the same as any other. xx

Retrolady Wed 20-Apr-16 10:27:10

Couple of typos in the above - sorry: thinking as I type without connecting fingers to brain!

kittylester Wed 20-Apr-16 10:33:19

I'd just like to point out that despite what it says about stuffing in my last post, that is NOT what we are about. blushgrin

misunderstood Wed 20-Apr-16 10:36:10

When my beautiful late Mum was in a home in later stages of dementia I noticed that when they had people in singing old songs the residents feet were tapping along and my Mum and a few others seemed more alert. Just like to say how I admire people like you who want to genuinely help. Good Luck.

cathyd Wed 20-Apr-16 10:52:23

Knitting rectangles would be an easy option for dementia sufferers and carers alike and could be stitched together to make hand muffs. I read somewhere that using different types of wool and adding buttons, small pockets, bobbles etc to the muff gives the person different textures and shapes to keep their fingers occupied. It might also prevent buttons being pulled off their own clothing and small items could be stored in the pocket.

vickya Wed 20-Apr-16 11:17:03

When my mum was in her final years taking old photos in and talking about the people was one thing to do. For a group maybe some photos of how things were, old buses etc, scenes of things, pictures of the royal family? Things to talk about.

Chair-based exercise to music is good if it is possible. A beach ball thrown around. Stamping feet. Waving arms etc.

lizzypopbottle Wed 20-Apr-16 11:21:37

kittylester I saw one of those morning TV shows about the way a local authority functions a few weeks ago. Their library team was doing exactly what you describe for people with dementia and their carers. I think it was Wigan but don't quote me! I was interested because my mother had dementia. Anyway, a few of the activities I remember were:

A picture quiz of famous faces and places (appropriate era for faces)
A sing along to golden oldies (again appropriate to age range and someone acted as DJ)
Tea, coffee and biscuits
Hot lunch (I think people made pies, casserole etc. and brought it along)

I wish I could remember more of the actual activities but it was a while ago. You could contact Wigan library to ask advice. I'm pretty sure it was Wigan...

lizzypopbottle Wed 20-Apr-16 11:24:25

Just searched google for Wigan library dementia and there's quite a bit of info...

moleswife Wed 20-Apr-16 11:27:23

Great stuff, kittylester! I help to run a Dementia Carers group in my area because it is the carers who need the support most - they are living on a daily basis with a slowing declining and changing loved one and the emotional (and practical) stress that engenders is huge.
So I'd suggest you offer the facilities of a meeting room for carers to discuss their concerns and ideas, as well as the connections with other support services they may have made in the area. Offering this group to carers once their loved one has died is also important because by passing on their own understanding, experience and suggestions to those currently caring they receive bereavement support and a sense of being needed by others. This time away from the cared for is vital (even on a once a month basis) and might be facilitated by local Social Services, Alzheimer's Society (or other organisations).
As a result of this group we later developed a singing group on a different day when the carers and cared for can share the time together because singing the words of songs is often still managed even after conversational language fails.
We are totally voluntary and fund raise for everything but there are some kind, considerate people out there who are pleased to help when they can - especially those who have been affected by dementia and Alzheimer's.
Good luck with all your efforts!

elena Wed 20-Apr-16 11:33:01

I was in our local library the other day, and an old gent was perusing the shelves. We got talking and he told me he cared for his wife who had dementia, and was looking for talking books. I tried to help him find something, and he thought that short stories - very short stories - would be enjoyable for her. We couldn't find any, so I suggested he speak to the librarian.

I was looking for my mother, too, who does not have dementia but whose concentration is poor. I actually thought she might like the 'William' stories, written for children but hugely enjoyable by adults, read by Martin Jarvis - couldn't find them, either, so have ordered them.

kittylester Wed 20-Apr-16 11:48:57

We had the William stories in the car for our children - I loved them!!

Thank you for the suggestions - they are all welcome.

PatB8 Wed 20-Apr-16 12:30:29

Our WI are making muffs just like cathyd said, they are called twiddle muffs and help sufferers keep their hands occupied. I believe they are very useful. Also music from their younger years seems to bring back a sparkle.

Good luck with your venture.

grannyactivist Wed 20-Apr-16 12:45:03

Lots of good ideas here kitty. I use photographs/postcards and music a lot when I'm with people who struggle with dementia. Photographs of people and postcards of places can stimulate memories/conversations and music to sing along to is always a hit. We also play board games and I sometimes read or tell a short story to my group.

I think that whilst the people who have dementia are occupied I'd invite guest speakers to run workshops or speak on various topics for the carers. Hopefully a mix of fun and serious stuff.

Well done for giving it a go. flowers

Stansgran Wed 20-Apr-16 14:38:35

Our library does rag rug making. Seems to be popular.

annsixty Wed 20-Apr-16 17:21:36

I would just like to point out that some affected people, my H being one, do not like being reminded of past times. It reminds them of times when they could remember things and were leading a normal life. They are not all "away with the fairies" and are aware of what is happening to them. Good luck kitty with your plans, I'm sure it will be appreciated.