Where do all the younger onset dementia people go when they can no longer be cared for at home?

[Nosras]

Hi everyone
My husband who is 61 - 6 years post diagnosis - has just deteriorated to the point where he needs full time care. As I work full time we have had to put him into care. This involves an elderly people's home as there are no age specific homes available. As my husband still has insight he is fully aware that he is with people much older than himself. He is so depressed and looks so lost and alone. The home is really good but not at all geared up for looking after the younger person. Where do all the younger people with Alzheimer's go? We live in Leicestershire. Any advice would be appreciated. As a group do we need to do something. It is also making me sad too. I hate this illness!!!!!

 

[Grannie G]

I'm afraid the provision for younger people with dementia is so thin on the ground its appalling.

When my mother was in a dementia unit there was one resident who was 42 years old. He sat in isolation most of the time and the staff tried to give him some one to one companionship whenever they had time.

We can only hope as diagnosis becomes more sophisticated the need for care for younger people may be addressed but I'm not holding my breath.

 

[Amethyst59]

I don’t have any specific advice for you, but one sentence in your post stands out...that the home is ‘really good’. It was obviously chosen with care, and I wonder if the staff would be willing to facilitate activities that your husband would enjoy? Or would it be possible for him to attend outside activities with people nearer his own age? My husband still attends a Cogs club, (cognitive stimulation) even though he has recently moved into care. I have heard of an organisation called ‘men in sheds’ that might be suitable for your husband.
You could have been in the position where you had chosen a home for younger people, but found the level of care not so good. On the whole...better to have the care right, than the age range.

 

[smartieplum]

I'm afraid the provision for younger people with dementia is so thin on the ground its appalling.

When my mother was in a dementia unit there was one resident who was 42 years old. He sat in isolation most of the time and the staff tried to give him some one to one companionship whenever they had time.

We can only hope as diagnosis becomes more sophisticated the need for care for younger people may be addressed but I'm not holding my breath.

42? That is frightening.

 

[DeMartin]

I’m sure someone posted in the last year about a fit young onset loved one. I think they found help through a brain damage organisation. Maybe another poster can rember more details or a link to the post

 

[Lym13]

I'm afraid the provision for younger people with dementia is so thin on the ground its appalling.

When my mother was in a dementia unit there was one resident who was 42 years old. He sat in isolation most of the time and the staff tried to give him some one to one companionship whenever they had time.

We can only hope as diagnosis becomes more sophisticated the need for care for younger people may be addressed but I'm not holding my breath.

I don’t have any specific advice for you, but one sentence in your post stands out...that the home is ‘really good’. It was obviously chosen with care, and I wonder if the staff would be willing to facilitate activities that your husband would enjoy? Or would it be possible for him to attend outside activities with people nearer his own age? My husband still attends a Cogs club, (cognitive stimulation) even though he has recently moved into care. I have heard of an organisation called ‘men in sheds’ that might be suitable for your husband.
You could have been in the position where you had chosen a home for younger people, but found the level of care not so good. On the whole...better to have the care right, than the age range.

Men in Sheds is a superb organisation, but they can only manage with chaps who are early on in their journey x

 

[Lym13]

Men in Sheds is a superb organisation, but they can only manage with chaps who are early on in their journey x

 

[Langleys10]

This is my main worry too. My husband is 55 and was diagnosed 2 years ago, but he has deteriorated a lot recently and will soon need full time care to replace the 23.5 hours we currently get while I work full time. Our children are teenagers and there is no way they can help. We tried a day centre to give him some variety, but it was for the elderly and he hated it. We looked at men in sheds, but that is quite expensive. I also recall someone saying on this forum that a centre for brain damaged people was a good choice. I even looked into setting up a day centre myself, thinking that might be a way of spending more time with my husband while he is reasonably cognisant but earning an income too, but the costs are fantastically prohibitive. Has anyone else looked into this?

 

[marionq]

Hi everyone
My husband who is 61 - 6 years post diagnosis - has just deteriorated to the point where he needs full time care. As I work full time we have had to put him into care. This involves an elderly people's home as there are no age specific homes available. As my husband still has insight he is fully aware that he is with people much older than himself. He is so depressed and looks so lost and alone. The home is really good but not at all geared up for looking after the younger person. Where do all the younger people with Alzheimer's go? We live in Leicestershire. Any advice would be appreciated. As a group do we need to do something. It is also making me sad too. I hate this illness!!!!!

When we were still going to Alzheimer’s Scotland groups such as singing, bowling and allotments a few of the younger patients from nearby care homes came along too. Sometimes with staff from the homes and sometimes with family members who made a point of bringing them to that group. Football memories was especially popular with men and they always had a laugh.

 

[Kevinl]

Age is just a number, it's about both physical ability and mental ability. My wife has been in care for over 2 years now but on physical ability I'd put her in the bottom 30% of the residents, there are people in there nearly 30 years older than her who are more mobile. The same with mental ability, I'd put her in the bottom 10-20% as she can no longer talk or understand what is said to her, can't feed herself, is incontinent...in some respects she's one of the most affected residents but she's also on of the youngest as 65 years old, the youngest is a 62 year old man.
How would the business model work if you only take people who are young and still have insight, do you kick them out at a certain age or when their score on a memory test falls below a certain level, how would it help knowing you'll have to move when you hit 65 or you fail a memory test?
There may be some age specific homes but they'll be few and far between as by their nature their client base will be self limiting.
I can have a more meaningful conversation with one of the residents in the home who's 93 which is 28 years older than my wife, she walks to the dining room where my wife needs a wheelchair and can put the food in her mouth for herself a thing my wife can no longer do.
Age is just a number when it comes to AZ.
K