Provide intelligent programs for people with early onset
The idea: Provide a programmed environment for younger onset people where they can do "normal" stuff with minimum situation, socialize and have fun (and give care partner some respite).
My name is Eileen and my husband Ray was diagnosed with early onset Alzheimers disease in Jan 2001 at age 54. We live in New Zealand.
I looked after Ray at home for 6 years whilst continuing to work. We had to circumvent the system to get some home-based suport. I would not put him into respite care or day care until I became ill myself - he was too young and physically fit.
Younger onset people do not need rest homes - they are not elderly. They do not need day care - they are not children. But carers do need a break.
What they do need is to to be able to do "normal stuff' with the minimum of supervision. Activities - gardening, mini golf, painting, walking. They are still physically actrive, still want to socialise.
This program should be implemented by community groups, paid for by the health service. This type of operation would keep people at home for longer and would allow carers to have a break without feeling that they are condemming their partners to geriatric conditions. Occupational therapists can come up with multiple ideas, but no-one is implementaing them.
I've seen first hand how depressed my husband became after spending 4 days in a rest home, so that I could have a necessary break.