Are Dementia cafes good for Dementia sufferers or just for the carers?

[Sue17]

Every now and again while in rare lucid moments my mum says she would love to meet up and talk to other Dementia sufferers.
What is the best way for her to do this? I have thought about Dementia Cafes ...do these work like this or are they mainly for carers.
Mum has never been sociable, as I mentioned in a previous post, and would literally sometimes run away from social situations before the Dementia but now she's saying this.
She is also constantly saying that she is lonely, even though she has lived across the road from me and my husband and her two grandchildren for 20years and was independent to the point of not even seeing her grandchildren (my kids) more than a couple of times a year despite always of course being welcome to come over to us anytime and me sending them over to see her over the years and she saying hello and goodbye almost in the same breath LOL
Now she says she's lonely and my adult children hardly know her, in fact sadly, although they try to help her, they are now even a bit scared of her with the things she says in her dementia moments. I'm sure things could be different if she had been a caring Granny pre-dementia.

Is it that all Dementia sufferers say they are lonely no matter if they have family nearby or Is it just the state of mind being empty that feels like loneliness? It does upset me when she says this, as my husband or I are there with for her at least 3 times a day. We take her to appointments etc and she pops over to us whenever she wants for a cup of tea.

Anyway has anyone any advice on Dementia cafes or similar type places or clubs? Do they help?

Thanks in advance.

 

[marionq]

Every now and again while in rare lucid moments my mum says she would love to meet up and talk to other Dementia sufferers.
What is the best way for her to do this? I have thought about Dementia Cafes ...do these work like this or are they mainly for carers.
Mum has never been sociable, as I mentioned in a previous post, and would literally sometimes run away from social situations before the Dementia but now she's saying this.
She is also constantly saying that she is lonely, even though she has lived across the road from me and my husband and her two grandchildren for 20years and was independent to the point of not even seeing her grandchildren (my kids) more than a couple of times a year despite always of course being welcome to come over to us anytime and me sending them over to see her over the years and she saying hello and goodbye almost in the same breath LOL
Now she says she's lonely and my adult children hardly know her, in fact sadly, although they try to help her, they are now even a bit scared of her with the things she says in her dementia moments. I'm sure things could be different if she had been a caring Granny pre-dementia.

Is it that all Dementia sufferers say they are lonely no matter if they have family nearby or Is it just the state of mind being empty that feels like loneliness? It does upset me when she says this, as my husband or I are there with for her at least 3 times a day. We take her to appointments etc and she pops over to us whenever she wants for a cup of tea.

Anyway has anyone any advice on Dementia cafes or similar type places or clubs? Do they help?

Thanks in advance.

We went to every group available in the early days and I am grateful as they helped me to avoid being depressed. The cafe was my least favourite because I needed a focus so the allotments, singing groups, football groups, walking groups suited me better because something was happening.

The best part of attending these while John was still a bit lucid is that he then adjusted to daycentre and eventually respite without any problems. I really couldn’t have managed without all of this.

 

[Beate]

I've gone to a dementia club for a long time. There are two different ones here, one is the Thursday Coffee Club and one is Singing for the Brain. Both are organised by the Alzheimer's Society, and neither of them actually contains the word dementia. I was going on my own as OH was in the Day Centre, but I was actually the only one doing that. The other carers brought their loved ones along, and there were also a handful of PWDs attending on their own. It's always a very mixed group, and honestly sometimes I wasn't sure whether I was talking to a carer or a PWD! The activities are always enjoyed by everyone, though of course the people you'd encounter would normally be in the earlier stages of dementia, where they can still interact and enjoy social get togethers. So yes, it's definitely for everyone but don't confuse it with carer forums which have guest speakers and are usually only for carers.

If she feels lonely you could also look into day care centre and/or a befriending service where someone comes to her house to spend time with her. You don't have to feel guilty or think that you don't do enough for her, but fact is that a constant state of confusion can be very scary and I guess PWDs just feel better with other people around them if they are anxious. It's heartbreaking that your adult children would feel scared of her - it usually is the other way round and someone with dementia can feel constantly scared, which makes them act hostile sometimes. Maybe this article about compassionate communication can help better understanding?

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[Tin]

In the early days for mum we used to attend the memory cafes in our area. On arrival all mixed in one room and then at some point the carers were taken in to a different room. They sort of worked for us, but big problem was when I left mum with other Dementia sufferers, the staff were great at handling mum, but she became anxious and wanted to find me, so short lived coffee with other carers. Also our biggest problem was, and still is, mum's obsession with her dog, it was not allowed in the building, so we rarely stayed for longer than 45 minutes.

By far our best outing and meeting other people is when we go for morning coffee at her fav café or local garden centre. Got to know a lot of people in these places who do talk to us and we can easily pass an hour or so this way. the big benefit - they allow the dog on the premises..

 

[karaokePete]

We tried our local Memory Café and found it good - to a point. Ours was for both carers and their loved one. It started with a 'get together' over tea/coffee then moved on to announcements by the local AS rep and we both found these parts useful and enjoyable. The third and final part was an activity of some sort and we didn't find that part useful as it was geared towards people much older than us (my wife is early onset). It was because we weren't allowed to skip the final part that we stopped going but I would certainly consider going back at some stage in the future.

As to the 'lonely' thing, I see that with my wife too so maybe it is common. My wife just doesn't remember doing things so gets the idea that she isn't doing anything. Frustrating for the carer!

 

[canary]

My OH is early onset too.
We have found a lot of support from a regular MU coffee morning. Its just a drop in coffee morning and nothing happens except a lot of chat, but almost everyone who goes has some experience of dementia and there are 2 or 3 people who come who Im pretty sure have dementia themselves, so it is very dementia friendly. I dont feel I have to look out for OH all the time there. If you have a PWD who is still quite aware and younger than most other PWDs, it is worth looking out for alternative meetings and coffee mornings

 

[Tin]

A couple of churches in our area do weekly coffee mornings, one even does a monthly lunch. I take mum to a lot of these morning venues and she does seem to enjoy herself, that is most of the time she is smiling, but unfortunately when home she has no memory of our morning activities. It does not upset me anymore, because I know, even if she does not, that I am doing all I can to entertain her and helping her keep some contact with our world and a few hours out in the morning means that I can get on with other household things in the afternoon with no guilt. I now keep weekends free from any activities, try to keep these as at home days, I need my rest!

 

[SnowWhite]

I used to take my Mum to a group and she loved it. I took videos on my phone of her singing and shaking bells and really enjoying herself. Carers had to stay with their caree and I enjoyed it too. We had coffee and cake and there was a lovely sunny courtyard with outdoor games and we often sat out there and had a chat.

Like someone else said, I couldn't tell who were the carers and who were the PWD but we all got along fine and had a lovely Morning. We did quizzes, jigsaws, singing, games etc. Mum really benefited from going there And I would like to think that when I get her settled in a nursing home again we can go back.

 

[Nanawendy6]

We have been to one or two groups. Am sure it would be helpful for me but making him do something he is not happy with is painful. Only on one occasion did I try to ignore his body language. This was a music afternoon then tea and more music. It was obvious he wanted to leave after he'd finished eating. Two people I was sitting with smiled but didn't have much to say. It wasn't till the lady asked for the fourth time if my husband liked crisps I realised that they were both PWD! I wouldn't expect him to cope with being in separate rooms. He has semantic dementia and very poor understanding of the spoken word which makes it so much harder for him. I'm also anxious that he may get agitated/distressed. At one group a carer got too close to him, trying to shake his hand and he swore quite violently at her- he likes his space! I did enjoy sitting with other women who have husbands with dementia albeit not for very long. Because of my anxiety I couldn't relax. One small thing I did find difficult was being asked if I was his carer rather than if I was his wife partner whatever. Too sensitive? Having said all that I will keep on trying with the groups maybe he will eventually get used to staying a little bit longer. There are very few things that we can do together so I value the opportunity to be out socially even to share tea and cake.

 

[SnowWhite]

We have been to one or two groups. Am sure it would be helpful for me but making him do something he is not happy with is painful. Only on one occasion did I try to ignore his body language. This was a music afternoon then tea and more music. It was obvious he wanted to leave after he'd finished eating. Two people I was sitting with smiled but didn't have much to say. It wasn't till the lady asked for the fourth time if my husband liked crisps I realised that they were both PWD! I wouldn't expect him to cope with being in separate rooms. He has semantic dementia and very poor understanding of the spoken word which makes it so much harder for him. I'm also anxious that he may get agitated/distressed. At one group a carer got too close to him, trying to shake his hand and he swore quite violently at her- he likes his space! I did enjoy sitting with other women who have husbands with dementia albeit not for very long. Because of my anxiety I couldn't relax. One small thing I did find difficult was being asked if I was his carer rather than if I was his wife partner whatever. Too sensitive? Having said all that I will keep on trying with the groups maybe he will eventually get used to staying a little bit longer. There are very few things that we can do together so I value the opportunity to be out socially even to share tea and cake.

Nanawendy - I think a lot also depends on the volunteers. At Mums group there were loads and they were all really friendly and encouraged people to interact. I was interested in what you said about music because there was one gentleman and he got really agitated if there was any singing or music. He just hated it and one week he was in such a rush to get away from it that he fell down really hard. The volunteers knew this and when they arranged their programme they would always let him know in advance If any music was involved but sometimes he would get his dates muddled and would turn up and then get upset.

I did try one group (without Mum) before I found this one and the atmosphere wasn't so good so I decided to try the second one and I'm glad I did.

 

[Nanawendy6]

Thanks for your reply snowwhite. I have read your posts before. You have a lot to deal with yourself so appreciate your reply. I would like to find a group we would benefit from. It's so difficult finding something that husband will, if not enjoy, accept. I have to be led by his needs though. He just wants to be at home alone in his room playing computer games.
I am frustrated by his inability to tolerate other people not just because it has an impact on my life but also can't see how sitting for hours on end can be good for him. (8+ hours, refusing food accepting drinks, moving only for toilet trips. Refusing to go out. Not unusual). The music afternoon was very disappointing. Until dementia we went to many classical concerts so thought it would be a winner sadly not. It's hard to know how to help other people to interact with him even experienced Carers haven't found a way. But will keep trying and hope to find a group with those special Carers as you did with your mother.

 

[canary]

Hello @Nanawendy6 My OH has FTD and he just wants to spend hours on end in the conservatory on his android. He gets sensory overload as part of his FTD (its a frontal lobe thing!), so hates lots of noise and if he is in a place with lots of noise I can see his eyes glazing over and he gets very confused. At home we spend hours in silence as he objects to having music on and musical activities would not be helpful to him. I find that small groups suit him best. Perhaps your husband also gets sensory overload.

 

[Nanawendy6]

He does! Very quickly. Chin on chest, sometimes closes his eyes and uncomfortable sitting posture. As if he's ready to run. Also recently noticed he strokes seat cushion in cafe we always go to. We spend most of our time in silence. Semantic FTD ended conversation years ago. Hard work isn't it? I don't think other people get how hard it is living the way we do.