Diagnosed with dementia: What next?

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Yesterday I ran a pre conference workshop called Diagnosed with dementia: What next? as part of the National Dementia Congress in Melbourne, where I am presenting YOD: Reclaiming my  life today.

The workshop yesterday was with a small group of people working in the dementia sector, nurses, psychologists, social workers and so on, all keen to provide better support to people with younger onset dementia. The workshop included them working in small groups on the pathway of support they either provide, or currently available to people with YOD, and then to do the same for a person who had a recoverable stroke.

The first most interesting part of this for me, was that in my preparation, I printed off a number of relevant, but very basic Help sheets from the Alzheimer’s Australia website to assist them with care plans for someone with YOD, then went to the Stroke Foundation, and printed off the Stroke management guidelines, all 167 pages!

The care plans they came up with for the person with YOD included:

  • Diagnosis
  • Information to client and family
  • Talk/ask/feelings/needs/family needs
  • Empower/engage/individualised services/PCC
  • Identify changes, goals, barriers
  • ACD’s
  • Referral to respite/ care/link workers
  • If possible, support to stay at work
  • Support groups
  • Information, e.g. managing money, symptom ‘management’

The care plan for the person who’d had a stoke included;

  • Diagnosis
  • Assessment
  • Information to client and family
  • Rehabilitation
    • OT
    • Physiotherapy
    • Speech pathology
    • Walking/mobility rehab
    • Dietician
    • Psychologist
    • Social worker
    • Specialised fine motor skill rehab
    • Counselling, including grief and loss
    • Support groups

The second very interesting part of this workshop, was that, in reality, the first case study appeared to be quite challenging for the group, due to the fact, there are very few services for people with YOD (or dementia generally), and because the post diagnostic support offered by the sector is VERY limited, and misses for the most part, more than end of life, managing symptoms, and aged care services, rather than any real interventions. The contrast was quite stark, as the ease with which the second case study was tackled, and care plans that evolved, were quick, and easily followed national guidelines.

We have no national or international guidelines for the post diagnostic support of people with dementia yet, a very great failing, in my humble opinion…

19 thoughts on “Diagnosed with dementia: What next?

  1. Kate you know I listen to your perspective on this and respect you enormously. I want to comment on this post in two ways – 1. as one of the professionals in the room who contributed to these lists, and 2. as a person who returns to her post tomorrow to do everything I can to support best possible outcomes for people diagnosed with dementia.

    As a person in the room on Wednesday I can assure you that every day of my working life I refer people with dementia to all of the same services that were listed for the stroke group. I am not alone in this, having spoken about this to another person in the room that day. We agreed that when we offered “refer as appropriate” it was a shortcut communication for referring to all manner of allied health, medical, lifestyle, academic, alternative, social, sport etc etc as agreed with the client during the phase of establishing values, goals, barriers to QOL etc. These things are reviewed over time and often a new list is generated. Some colleagues in the room were unaware of referral options in their area, and yes there seems room for growth there. From my point of view, where I went wrong on Wednesday was not actually labelling the services that I refer to.

    Secondly, I give my life to supporting best outcomes for people with dementia Kate, as my family will attest. I return to my role tomorrow to take on board your frustrations and feedback and commit to the challenge of writing rehabilitative post diagnosis pathways to help guide doctors, counsellors, ACATs, allied health workers +++. I am confident we will have a strong advocate (PWD) participate in this process. I recently chaired a small group which constructed pathways for a timely diagnosis of YOD, and a follow on ‘post diagnosis’ pathway beyond referral to a YOD key worker (spanning all ages) is clearly warranted. I agree that across the board there is less emphasis on rehabilitation for people with dementia than there is for people living with the after effects of stroke and I will address this. I will have obstacles I am sure, however I want this hurt to fuel meaningful change for people with dementia.

    • Thank you for sharing this Denise… it is really good to know. I absolutely know you have devoted your life to it, the reason why I wanted you there too, btw, some small way of being able to thank you for that. And as you know, I’ll always be happy to help you with the pathways towards rehabilitation and better outcomes for people with dementia. You continue to be one of the shining stars in the industry, and it was very encouraging to see more of them over he two days in Melbourne.

      • And a huge thanks Kate for your generosity, your support was and is very much appreciated. I did gain from the congress and having more time with you and if I can get up and running a half of what is going on in my head today you’ll be proud! Yes I will certainly keep you involved in the process of the pathways document. 🙂 x

  2. Pingback: “Diagnosed with Dementia: What Next?” workshop update | Creating life with words: Inspiration, love and truth

  3. Kate, there’s a fundamental difference in planning for PWD and PWDisAbilities: for PWD there’s no principle of engagement or rehabilitation, according to our Alz Aus counsellor. So let’s start with educating Alz Aus dementia counsellors!!
    No wonder I can’t find anyone to help me develop a decent care plan for V….3 years post-diagnosis.
    I’m VERY pissed off about this, feel like starting a raging email argument and abandoning the long drive to my next counselling appointment.

  4. Do they have similar problems in the UK, US and Canada? Or are they a bit more advanced than we are in Australia?? Maybe you can do a brief blog post about this at some stage

  5. That is an interesting contrast. I am beginning to appreciate the support my husband, who has dementia, has received when I read the lists. We have been fortunate to find one doc who sent him to both occupational therapy and speech therapy, as well as tested his vitamin D level, and prescribed a supplement when it was found to be low. Another doc tested his B-12 level, which was deficient, and he is now on B-12, as well. We discovered a Memory Enhancement Course near by, and he goes to that two five hour days a week. I think all of these are helping him, yet I think he is unique in having found so much to help him. Too bad this is not standard operating procedure.

    Trudy

  6. Kate, the truth is this is the type of support services avaiable for all illnesses with the exception of dementia. The sad part is there seems to be no concern for our quality of life, even though we may live another 20+ years!

    • Yep, dementia is still the only illness/disease i know of where we are told to “get our end of life affairs in order, get acquainted with aged care, and give up!”… not only disgraceful, unethical and immoral, obviously only IMHO!!

  7. A telling scenario Kate; illustrating the stark difference between the perceptions of dementia and injuries that are considered recoverable. Your work as an advocate and educator challenges these perceptions and will make sector professionals consider their views on all dementia, YOD or later onset. Hopefully, in due course, by putting the questions and posing scenarios, professionals will find it less difficult to generate ideas and appropriate responses to support the person diagnosed to live well with dementia. Keep it up.

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