Fred and Sandra - In 2011, at 56 years of age, my husband Fred was offered a package ending his career with AHS. Shortly thereafter he was formally diagnosed with Early Onset Dementia; he is now 59 years old. Prior to diagnosis, he was physically fit, active and athletic; he enjoyed walking, hiking, cycling, golf, skiing, gardening, shopping and cooking but is no longer able to do any of these things independently. He needs cues, reminders, supervision, support and assistance due to poor short term memory, orientation, problem solving, judgement and initiative. Our retirement was not the realization of the hopes and dreams we had for this period of our lives. I find myself without the life partner, the man I married so very many years ago. I am his full time caretaker as there are insufficient services for people at a young age with this relentlessly progressive and ultimately terminal condition. I am his sole support (friends, even family, do not usually stick around to help). There are few home care/day program options and what does exist is simply not suitable as they are geared to an elderly population. The path for older people with Dementia is quite different from young onset. Where will he, this physically heathy, fit and active man, live when his care needs exceed what can be provided in the family home? Again, the current option is long term care alongside the many frail elderly, often with numerous medical and mobility issues. Our grass roots group seeks input from our government on how this issues will be addressed. Issues: Appropriate programs and care facilities for our young population diagnosed with dementias.
UPDATE (March 2016): Fred attends a day program two days a week which provides a break for Sandra.