Day care for people with younger onset dementia

imageOne blog that has been brewing in the back of my blogosphere for a while is day care respite for people with younger onset dementia, a topic close to my heart.

Why day care or respite at all, when in fact, many of us could have been supported like any other disAbled person to stay at work?

Of course, when we are in the later stages of dementia, our care partner may need a break, and we might have to go into respite care to support them, or we may even need residential aged care permanently, but day care, a place where small children go while parents work?

Many people with younger onset dementia are diagnosed much earlier in the stage of the disease process. It is not the disease we fear the most. In fact, it is rarely a disease we consider as a possibility. When I attended a Living with Memory Loss course not too long after diagnosis, it was suggested to everyone that we even considered trialling aged care respite before we needed it, to get used to it. This in no way supported me to live well with dementia, or to ‘fight for my life’ .

Personally, I find the volunteering I do, and the advocacy for people with dementia which includes attending and speaking at conferences and other events, is a far better form of respite than ‘Day care’ for everyone, especially my husband and I. This week I spent two days in Melbourne as a consumer (volunteer) for Alzheimer’s Australia, and buddied up with another person with dementia from Adelaide for his first time at one of these meetings. He agrees with me that living a normal life, is much more fun, far more rewarding, and about living well with the disabilities he/we have, than attending ‘activities or events for people with dementia’.

The photo above is of me representing Dementia Alliance International with two delightful women from the Alzheimer’s Society in Taipei, at the ADI2014 conference in Puerto Rico this year… so much more fun than “getting myself acquainted with aged care”, as advised to me a few years ago!

 

20 thoughts on “Day care for people with younger onset dementia

  1. I am my sister in law’s full time carer as Phyllis has younger onset dementia, who was diagnosed 4 yrs ago. Phyllis is 56 yrs old. It has been very enlightening to hear how life is from your point of view. Phyllis was diagnosed quiet late into her illness & we haven’t really been able to talk to her about how she sees her changing life. Our goal is to keep Phyllis home for as many years as possible. I feel honoured & privileged to be the one to help her live her life in the here & now. I don’t take over from her & wait until Phyllis asks for help be it with showering, dressing & now with the toilet. I know that my work for many years in nursing homes has help me with my caring role & having a sound knowledge of how dementia progresses. However that being said your blog has challenged some of my beliefs & ideas about people who have dementia & made me realize that people with dementia have a very limited import into how services are delivered to them & your lack of a voice with in committes & organisation’s. I wish you well with living life to the fullest & look forward to your ongoing blogging.

  2. Kate the thought of people newly diagnosed being given this advice (go and get used to it) absolutely horrifies me. How can any reasonable person with an ounce of empathy or nouse even entertain this? I have heard of it happening and had hoped it was a one of!

    Oops sorry – I’ve crossed the line into the judgement.

    I love your reasoning about advocacy and conferences and living! So much smarter than ‘day care’, another term I find horrifying. So much work yet to be done Kate, so all power to you and those who are moving into the area of awareness raising and living well with dementia. And, I have submitted abstracts for Perth 2015 ADI/AA and I look forward to catching up with you again then (if not before).

    🙂 x

    • Hi Denise… it still seems to be the norm, sadly. Even the Living With Memory Loss course supports getting use dto aged care and dying, rather than living well… we have much work still to do. Thrilled you have submitted abstracts for Perth too! x

  3. Decades ago I was heavily involved in the “Independent Living Movement” of and for people with severe disability in the U.S.A. It was a monstrous effort at that time to write laws and influence society in a way which helped the general public understand that people who were crippled in one way or another were capable of independent living and much more. We demonstrated for the removal of physical barriers which prevented community access for people who could not walk or talk affectively; and wrote and lobbied for laws which insured that people with severe disability could access work opportunity and avail themselves of community resources of many types. I was fortunate enough at that time to be one of the original architects and writers of the Americans with Disabilities Act (ADA) which was the primary law in this country which guaranteed numerous “equal opportunities” for those of us with severe disability. Among other outcomes was a movement to turn many Day Care Centers into Independent Living Centers where the person with severe disability was encouraged and stimulated to do as much for themselves as possible. Such centers were and are governed and run by people with severe disability.

    Now that I have Alzheimers, I struggle with people and institutions which generalize about my disability in a way which deprives me of my independence. However, I do believe that it is my personal responsibilty to stand up for my own independance when and where I can. Often those who attempt to be “care givers” become inadvertant takers of our freedom. Care must be taken by us to properly acknowlede those who are trying to help us while we strive to maintain independence. The language used to provide support for our freedom is critical. I laud your efforts regarding language and acts which “take care of us” in ways which diminish our personal independence.

  4. …. and you’re doing a good job and looking after yourself!!

    But we as a society should be noticing that there are an increasing number of singles in society ….. a lot of people will remain unmarried, plus there’s a lot of people that aren’t having kids either, and if they divorce then they are basically “single” too. And divorced parents are ‘single’ too unless they partner up with someone else. All these people won’t have a ‘carer’ at home to help them stay at home as long as possible, so they will be the ones that will have to enter care facilities before the married ones.

  5. Hello My Friend – you know that I manage a wonderful program for people with dementia – and we provide meaningful and age appropriate opportunities for younger people living with dementia as well. I feel that “Day Care” is an outdated and oh-so-not “person centred” term that smacks of medical care and an inability to care for oneself.
    What we need to be doing is providing supported social and volunteering opportunities where people living with younger onset, as well as early onset dementia can continue to contribute and make a difference, rather than lumping everyone together into a “day care” model where one size is presumed to fit all.
    We are limited by our funding – fund us adequately – and we can be everything you want us to be!!
    xxxxxxxx

    • Yes, I have seen your wonderful centre, and did find it to be one of the more progressive ones I have ever seen…. I guess my real point to this blog for younger people with dementia is we should be suported to stay at work, like any other disabled person, for as long as possible, not just volunteering or social activities. Keep up your great work lovely Sarah xox

  6. Go for it Kate…Living is what keeps us all going. It’s not living your life and remaining passive to it that weakens our systems. You are on the right path. Enjoy what you have and find reason for gratitude. Preparing for and testing out aged care is insanity! What a way to negate the joy of living…Much more strength and endurance comes from going for the gusto! Blessings and love…VK 🙂

  7. Great topic, makes you think.

    It’s a bit like we’re all going to die one day so to get us used to the idea maybe we should all spend one day a month lying in a coffin just to get used to it.

    The more I think about this it makes me aware that it is just another attempt to make people fit a very convenient solution devised by people who have no idea of what it’s like to live with dementia.

    Well done Kate.

    xxx

      • When my sister in law was diagnosed with younger onset dementia four years ago , we were advised to book her into the local day care Centre, so she could become used to going and that Phyllis would enjoy it. . . . . . . wrong on all counts! Phyllis attended only twice before voicing her displeasure in going, Phyllis has never set foot in the Centre again.
        We were then advised to join her a group of people with dementia ( they were all older ladies ) & Phyllis would enjoy being with a group of people with dementia. I had concerns about this, but they didn’t listen to me & said that we had to try the group session before they would consider one on one care for her. The outing did not go well for anyone involved, Phyllis was brought home early and was very angry with her husband and family for days after this event.
        Then only last year we were advised by a so called “expert in dementia care ” to book her into nursing home respite care each month so that Phyllis could get “used to it, needless to say we haven’t taken their advice!
        We have spent the last four years living life to the fullest & look forward to many more years of Phyllis being involved in every facet of life with her family and close friends supporting her to achieve this. Phyllis is a young woman of 56 & yes requires help and support but is continuing to enjoy her life. I as her full time carer intend to help her stay home for as long as possible, now when people ask me how much longer do I think I can continue to care for Phyllis, I reply “how long is a piece of string”!

      • It still shocks me (but does not surprise me) that this is still happening… imagine if she had been diagnosed with cancer and not dementia, and was told to go to aged care and get ready to die?????? huge hugs to you both x

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