Different Support Needs for Younger People with dementia
- Thread starter ledlowe
- Start date
Hi
I am 53, and was diagnosed at 51.
I am at an early stage of dementia, and don't feel that I want to mix with older dementia sufferers at present.
I am a volunteer at a school, where I hear 5+ year old read. I find this really fulfilling. I was lucky that at the time I needed what is very much support, the local church school made a request for volunteers at church.
What I really need is for people to co-ordinate volunteering for this, and somebody who can mediate between volunteers and the headteacher, so that I know when it is time to stop, and the head does not have to address this. She has enough to do ensuring the quality of education for the children.
John
I am 53, and was diagnosed at 51.
I am at an early stage of dementia, and don't feel that I want to mix with older dementia sufferers at present.
I am a volunteer at a school, where I hear 5+ year old read. I find this really fulfilling. I was lucky that at the time I needed what is very much support, the local church school made a request for volunteers at church.
What I really need is for people to co-ordinate volunteering for this, and somebody who can mediate between volunteers and the headteacher, so that I know when it is time to stop, and the head does not have to address this. She has enough to do ensuring the quality of education for the children.
John
Reply to different support needs
Thanks John
That's really useful. Would you be interested in other volunteer work in another environment? Or if there was a social group/cafe for younger people with dementia would you be interested in that?
Thanks John
That's really useful. Would you be interested in other volunteer work in another environment? Or if there was a social group/cafe for younger people with dementia would you be interested in that?
I'm 39 and definitely don't want to participate in activities for 70 and 80 year olds.
Unfortunately there doesn't seem to be anything geared up to younger people with dementia as most people assume it's for the elderly.
Unfortunately there doesn't seem to be anything geared up to younger people with dementia as most people assume it's for the elderly.
I am 51 OH is 59 and we find everything is geared to people over 70 with loads of wartime singalongs, bingo games and B&W movies etc..
OH likes rock and roll Queen and Dire Straits, we like 10 pin bowling, swimming, car shows and motorbikes.
OH brews his own beer too.
Creative activities are fun, playing darts helps hand eye co-ordination but is fun too esp with a pint!
Most groups/information /activities through organised groups are just not geared to younger people at all.
OH likes rock and roll Queen and Dire Straits, we like 10 pin bowling, swimming, car shows and motorbikes.
OH brews his own beer too.
Creative activities are fun, playing darts helps hand eye co-ordination but is fun too esp with a pint!
Most groups/information /activities through organised groups are just not geared to younger people at all.
I used to work as a teacher, and so working with children comes naturally. I don't think anything else would, so I don't want to volunteer in a different environment.
Some contact with dedicted dementia support would be useful, but I do find social situations very difficutl.
John
Some contact with dedicted dementia support would be useful, but I do find social situations very difficutl.
John
My OH is 65, having been diagnosed 3 years ago. I agree, there is very little around for younger people who are still physically fit and active.
Everything seems geared to older people with old black and white films, war songs, memorabilia from the war etc.
We go to a local singing group for dementia sufferers and, upon our request, they have been happy to put some 60s tunes in to sing.
There is a film showed once a month for dementia sufferers but my requests to show films other than old black and whites, haven't been fruitful.
My OH would love a walking group with similar folks, with leaders who have an understanding of the condition.
Perhaps a walking football group too.
Similarly, I am told that the day centres around here are not appropriate for him, as he is 'too young.' Respite care outside the home is presenting similar problems.
Things need to change and thanks ledlowe for beginning to give some hope that things might change in the future, with the help and efforts of folks like yourself.
Thank you,
JigJog x
Hi, My husband was diagnosed with AZ at 55. He didn't want to spend time with other people with dementia; he volunteers 1 day a week at a local charity. This has gone really well until very recently when they said that he was needing more one-to-one supervision so we now have a caregiver go with him to provide that support. He also has another caregiver who comes twice a week and they go cycling together. I work full time so my big challenge was finding some safe way of keeping him occupied and active during the day. He's very physically active but was starting to find that he was getting lost when he went out on his own on the bike. He also plays table tennis with a volunteer from the Alzheimers Society via their Side by Side scheme.
it was quite a challenge to find activities which would suit him. We tried via various social media groups first - local cycling groups etc, but it was difficult if they didn't understand about his condition and I was anxious that they would leave him in an unfamiliar place, also the arrangements were often quite ad hoc. It worked much better for us to pay for carers to provide this level of support, as we had certainty, although the care agency have admitted that is is pretty niche and they are lucky to have someone on their books at the moment who is keen on lots of physical exercise and able to keep up with him!
We tried a walking group (organised by the Alzheimers Society for younger people with dementia) which met during the week but he didn't like being with others with dementia, and it required me to be there to accompany him which didn't fit with my work patterns.
He also went to a dementia cafe once (again, aimed at younger people) but said it was all 'old people sitting around'.
it was quite a challenge to find activities which would suit him. We tried via various social media groups first - local cycling groups etc, but it was difficult if they didn't understand about his condition and I was anxious that they would leave him in an unfamiliar place, also the arrangements were often quite ad hoc. It worked much better for us to pay for carers to provide this level of support, as we had certainty, although the care agency have admitted that is is pretty niche and they are lucky to have someone on their books at the moment who is keen on lots of physical exercise and able to keep up with him!
We tried a walking group (organised by the Alzheimers Society for younger people with dementia) which met during the week but he didn't like being with others with dementia, and it required me to be there to accompany him which didn't fit with my work patterns.
He also went to a dementia cafe once (again, aimed at younger people) but said it was all 'old people sitting around'.
I used to enjoy going to the gym. They still get their money every month. I can get there on the bus normally with no problem. Getting home is more difficult. I keep getting lost trying to find the bus stop. It's not opposite the one to get there. I think it might be because of tiredness after exercise. I carry a dementia card and have a medi alert medallion which I do show to people when I start to have problems and before panic sets in. I have been given poor advice a few times and so have got very lost. So gym isn't possible now. My weight is well up.
Different Support Needs
Thanks for your reply. Could you tell me what kind of support or group you would participate in if it was in your area? Would a social cafe for younger people which was purely social be of interest to you? Exercise classes? Discussion/support groups? Thank you for your time!
Thanks for your reply. Could you tell me what kind of support or group you would participate in if it was in your area? Would a social cafe for younger people which was purely social be of interest to you? Exercise classes? Discussion/support groups? Thank you for your time!
Different support needs
Thanks John - it sounds like a small facilitator-led discussion group with other young people with dementia so that you could share experiences and strategies would be useful.
I think this is something a lot of people would find very useful.
Thanks John - it sounds like a small facilitator-led discussion group with other young people with dementia so that you could share experiences and strategies would be useful.
I think this is something a lot of people would find very useful.
Different Support needs
Hi JigJog
That is all really useful to me.
Thank you so much for that feedback. Do you mind me asking where you are based?
Hi JigJog
That is all really useful to me.
Thank you so much for that feedback. Do you mind me asking where you are based?
Have you tried the Alzheimer's Society Side by Side scheme? They could possibly have someone who could go with you.
Thanks so much for your information. Every person's (and their carer's )challenges are unique. Are there any 'group' activities that you think your husband would enjoy? Given that the activities I am looking into are aimed specifically at young people with dementia and their carers...
For me personally, a reading group (I still enjoy reading even though I sometimes struggle), a cafe is a good idea, something informal and welcoming rather than a dingy room full of old people watching war movies and listening to old gramophone records etc. Something more geared towards younger people basically. Maybe an ice cream parlour with a small petting farm outside, things like that.
He'd be interested in a cycling group or a walking group, or possibly something like walking football. Maybe a trip to the pub.
Thanks for this. I didn't know about the scheme. It's definitely worth looking into.
John
That's really interesting. My in laws used to live in Silverdale. We visited often. It helps to try and picture the places you describe in some of your posts.
John