Going out on a limb…

screen-shot-2016-09-16-at-4-16-56-pmI’ve been trying to post more regular boots for World Alzheimer’s Month 2016, and felt it appropriate today to would share one that may be mildly contentious. If it is something I believe needs to be said, then one way or another, I usually get around to saying it; I thought I’d take a risk just for Friday, which is often referred to as #ff on Twitter!!

The ‘dementia health and education sector’ and many academics still seems to prefer to refer to people with dementia as ‘people with challenging behaviours’, and they regularly provide workshops, courses and events for family carers, to support them in their roles.

Of course, it is necessary and important that our significant others who take on the roles of ‘care partner’ get education and support, as it is one very tough gig; I’ve had experience, and know just how emotionally and physically difficult it sometimes is. I also know the love and why we do it, and how rewarding it can be.

But, I do wonder if the sector, or people without dementia generally, ran courses for people with dementia, on how difficult care partners can sometimes make it for us, and if they did, whether carers would feel offended and object?

As always, I am prepared to go out on a limb…

Recently I received yet another invitation to my email Inbox about a workshop for Carers*, as I am still on a number of registers as a carer. These course titles and outlines consistently annoy and offend me, and make me feel like I am to blame for how hard it is for my carer, and how much of a ‘burden’ I am, or will be to him. The course outlines of these types of courses or workshops never make me feel ok… So, in an attempt to place the shoes on the other feet, I have reversed where the word carer was used in the most recent course outline I received, with people with dementia, and vice versa, and added a couple of additional workshop sessions. I doubt it would it feel ok to anyone without dementia, if we ran courses that make it sounds like carers are the problem?

“Understanding and positively managing the changed behaviours of carers”

This course runs over four weeks, with four modules focused on topics to support you with the changed behaviours of your carer. If you plan to attend, it might be helpful to find respite for your carer, You are also welcome to bring them along, as we will have a quiet room with a few activities for them if they don’t wish to participate in the sessions.
Module 1: Understanding dementia and the carers journey
  1. Introductions and course overview
  2. Understanding dementia
  3. Finding available services and supports for yourself and your carer
  4. Understanding the carers journey
Mobile 2: Managing changed behaviours and unmet needs
  1. Recognising and managing the changed behaviours of carers
  2. Understanding and supporting their unmet needs
  3. Asking for help: bringing in the Severe Behaviour Response Team or DBMAS specialists
  4. When to use antipsychotics: what is best practice

Module 3: Accepting help

  1. Supporting carers to accept respite
  2. The benefits of Secure Units for Carers
  3. Creative strategies for managing their unmet needs
  4. Dealing with the stress of the changes in your relationship with your carer

Module 4: Supporting carers to positively support you

  1. Strategies to stop your carer undermining you, talking over you, or underestimating your capacity
  2. Strategies for you to manage the burden of the negative public discourse by carers (on FB, blogs, in books, etc)
  3. Supporting carers to provide support for your disabilities and support your independence
  4. When to refer them to professional counselling or other services

shoesPs. I’m ready and waiting for the outburst…

BUT, I do really do it helps people without dementia get a sense of wearing our shoes, with a glimpse from this ‘reversed’ course outline; hopefully they may feel just how uncomfortable it is to mostly be the seen as the ‘problem’.

* I am using the term carer here, as it is the most commonly used term for the person who is an unpaid significant other, family member or friend actively supporting someone diagnosed with dementia. This course (if it were real), could very well apply to paid staff in community, respite or residential care.

40 thoughts on “Going out on a limb…

  1. Spot on Kate! I too like the term ‘navigator’; it implies being in a support and subsidiary role to the person actually steering their own ship. And I try always to use ‘fearful responses’ instead of all those pejorative descriptions of behaviours. That said, I’ve seen plenty of interactions where an angry response is entirely appropriate – like when some ignorant staffer prattles out childish platitudes and patronising drivel to a person with dementia. I cringe at the fawning ‘loved one’ description so prevalent in pamphlets and literature, and prefer the description ‘person experiencing dementia symptoms’ or ‘person with dementia.’ So much dementia language assumes to disempower, infantilise, and patronise a person with a diagnosis. Lets all keep up the mission for framing dementia diseases in terms of human rights, citizenship rights, disability rights (though even the use of the word ‘disability’ carries its own political loading), and self-determination.

  2. Kate Lambert, my dear old friend of 21 years, my 94 year old neighbour, is quietly ending his life at home, as he wishes, with support from Daughterly Care and a palliative care team provided by his package provider.
    His caregiver (one of them) & I have had a few moments to chat lately. I love what your organization does and the people I’ve met.
    Keep it up! We’re in the Illawarra BTW…his caregivers come from Sydney. That’s flexibility.

    • Hello Lynda, thank you for your kind words about the care and support we are providing your neighbour. I am excited for the Kate Swafters and her blog participants of this – people who want to live as best life possible because the Govt reforms of Consumer Directed Care ENABLE consumers of Government Subsidised In Home Care ie Consumers to choose:

      1) the TYPE of care that best suits them…in your neighbour’s case at the tipping point of needing 24 hour care, our clients choose our live in care service rather than a nurisng home. https://daughterlycare.com.au/our-services/live-in-home-care
      But for people like you who want to be ENABLED and supported rather than cared for, you can now choose service providers that ‘get that’ and who can support you in your goals and needs. You now have the power to choose which you never had before. You also have the power to hire and hire like a private client has always had.

      2) WHO provides the care. So now Consumers can choose a provider like Daughterly Care and say I want enabling care or re-enabling care or restorative care or I want to live for all my time joyfully at home and then die gently, pain free at home. Or what I need is in home respite care and your Consumer Directed Care in home care package can pay for that.

      3) FINANCIAL TRANSPARENCY – this is the gold of the reforms. In life, there is no power without control of the money. Now, for the first time in 20 years, Approved Providers HAVE to give Consumers a proposed budget of how the budget will be spent and monthly statements explaining how the Govt subsidy has actually been spent that month and what is left over. I have been persoanlly checking financial statements for In Home Care Consumers from all around Australia for 14 months for FREE to learn what is REALLY happening for Consumers of Government Subsidised In Home Care and it has been a real eye opener. I have negotiated Approved Providers down from 47%pa being kept by them of ALL the Govt and private money down to just 10%pa. That has enabled me to take my client’s package from the initial offer of 7 hours a week of in home care to 18.75 hours per week of care paid for by the Govt, without the client paying a cent more. And then by choosing the RIGHT TYPE of care, instead of buying care by the hour, we provided live in care and the Govt funding paid for 2 days ie 48 hours of care. 7 hours to 24 hours paid for by the Govt…that is the power of Consumer Directed Care…that is the flexibility and better outcomes and greater efficiency that the Govt wants to see.

      And its happening…but for very few consumers. Mostly I see hours cut, fees increased and Consumers taken advantage of.

      Read this case study of a wife living with a dementia, who due to her husband being hospitalised was placed into a nursing home despite the Govt pay over $100,000pa to their Approved Provider who kept $35,000pa in Admin and Case Management fees a year and didn’t case manage their care. We negotiated them from 28 hours a week of care to 96 hours of care a week and cared for them both at home.

      https://daughterlycare.com.au/home-care-examples

      More about Consumer Directed In Home Care

      https://daughterlycare.com.au/our-services/consumer-directed-in-home-care-cdc-packages

      I love Consumer Directed Care because of the better outcomes I can negotiate for consumers of in home care

  3. ROFL!!! Especially the 2 last modules😉
    Seriously doll, I was wondering what you were brewing and I love it. I’ve noticed in our community workshops that people mostly “get it” when we put this role stuff to them.
    Hard for old miserable couples though- too much relational history & water under the bridge, so the “burden” becomes “payback” rather than support.
    Will post to FB groups.

    • Glad to make you laugh Doll! It is only through wearing our shoes, that anyone can possibly ‘get’ it, also why it is so important more people with dementia speak at events, write books or blogs, and generally make a noise! love you both – and I will reply to your email, but you are right, I am almost worn out!! xxx

  4. What a brave and courageous woman you are, Kate. What a masterstroke, and turn of the tables. Walking the person, whether Carer or health provider, in the shoes of the other. A lesson on how to focus, first, and primarily, on the person with the illness. But what a shock it will be – your doing just that – achieving that, and so unexpectedly.

    Though I try to retain focus on my own quality of life now – a busy life still, but one that avoids these inevitable “brick walls”, this week I reacted to an email I received about a new service – Telephone Connect – designed, once again, exclusively for Carers; and so, again, excluding those who live alone, without an attendant Carer.

    When one confronts the system, there are the usual excuses that simply blame the victim for assumed disabilities they may not even have.The victim, without a Carer present, is assumed to be unable to participate in a Telephone Connect service. Does the Provider really know about the progress of the illness (now 12 years for me, and still using a telephone); or care at all about the victim’s plight – of their potential isolation, neglect and decline.

    • My dear Judy, it is wonderful to chat to you hear again… we must pick that phone up very soon. Always, thinking of you with fondest thoughts and love xx

      ps the book Lee-Fay and I wrote with your section in it (in full as requested) came out officially this last week – Chapter 10, pp. 245-246 – thank yo so much for allowing us to print it in our book xxx

  5. Very Brave of you Kate; yet it is balanced in addressing the needs of carer AND person with dementia. It made me reflect on the power of the buzzword “burden”. So powerful that I moved to another country so as to afford lodging and help, i.e. NOT be a burden.

    • Thank you my dear friend… moving so as not be seen/talked about/researched/reported on so constantly as a burden was a brilliant plan! Well done, and we will chat very early on Sunday (my time) xxx

  6. BRILLIANT! As I read this post in my mind I automatically substituted “Carer” with “Person With Dementia.” Based on my experience “caring” for Gregory I was offended by what the course was suggesting and know that I would not care for him in that way with that “medicalized” view. Then I realized what you had done … and wow! It hit home. No wonder I was offended (in a good way!) I would not want to be treated that way in the same way I would not treat Gregory in that way (or even discuss his care in those terms!) We really do need to SKYPE one day soon!!! Also, I will e-mail you a “sneak peek” at a session I am presenting in for the NorthShore University Health Care System Division of Palliative and Hospice (one of Chicago’s 2 or 3 large hospital systems) which is offering “continuing education” credits through the University of Chicago. A large part of my presentation is “rather than MEDICALIZING Dementia, my goal was to actively re-imagining our sense of “family and home.”

    • My dear friend Michael… it is wonderful to connect here, as always, and I did receive and read the ‘sneak peak’ of your presentation. In fact, I was in tears for some time… it is beautiful. Skype, very soon, yes please! xox

  7. BRAVO, BRAVO! This is such an important perspective and a valid point, and I am happy to share it on Facebook and spread the word. We have to stop talking about dementia as if it’s a curse or a dreaded disease or anything negative – it is what it is. You’re right to be offended, Kate. As caregiver to parents, I’m in constant need of reminding that there is nothing “wrong” with them; they are experiencing changes that require assistance in daily life, that’s all. Perpetuating the stigma of dementia is the worst thing we can do to our loved ones, and to our future selves if and when we, too, have to step up to the plate.

    • Thank you Lorrie… and yes, we must change it for the next generation (including current generation yet to get dementia). Constantly placing the ‘blame’ on the person with dementia for the ‘behaviour’ is wrong in so many ways, also why I disagree with the BPSD paradigm. Much love for your thoughtfulness and care x

    • If you remember Damian, I published them (referenced to you and/or work) in my latest book. What we did, was add a column of alternatives to show another possible way to do/see/act. Thanks for all you do, and for doing it with such open eyes and heart.

    • If you remember Damian, I published them (referenced to you and/or work) in my latest book. What we did, was also add a column of alternatives to show another possible way to do/see/act. Thanks for all you do, and for doing it with such open eyes and heart.

    • If you remember Damian, I published them (referenced to you and/or work) in my latest book. What we did, was add a column of alternatives to show another possible way to do/see/act. Tanks for all you do, and for doing it with such open eyes and heart.

  8. A clever post! Your point is well taken, though I am not a “carer”, but am the wife of a wonderful fellow diagnosed with EOD. He has named me the “nagavator” as it is my job to assist with reminders when I notice pitfalls ahead of us. I truly try not to nag, but try to help keep his independence first and foremost.

    • Thanks Sara… you sound like my husband, who I call my B.U.B. (Back Up Brain)! He detests being called a carer… I rather like navigator as well, so might have to write about the term (referenced to you of course). Take care

  9. Thank you Kate for your work. I find many of your perspectives very useful. The local hospital and other agencies in our locale could benefit from the dementia friendly community project. After being diagnosed with a form of dementia my wife was admitted to hospital with a stroke, but while other patients received assistance to deal with their stroke induced word finding difficulties, the only attention my wife received from speech pathologists focused on exploring whether she had difficulty swallowing. She didn’t. When I asked the obvious question, the reply was that given the diagnosed dementia, her word finding difficulty was due to that not to her stroke, and would not respond to intervention.

    However, your latest reflection has focused on another limitation in responses to dementia.

    “Not only did it (dementia) change his (my father’s) personality, it changed me into a person I no longer liked.” This is a sentence taken from an article by Julie Guirgis, “Losing and finding dad in dementia,” in Eurakastreet.com.au (June 2016). It was the one comment in the article that caught my interest, and led me to respond with my own recent experience:
    “I recently attended “Creative ways to care” (developed by Alfred Health Melbourne) for carers of people living with dementia: Responding to their relative’s “behaviours of concern” with diversional activities. The participants in the group, however, were more distressed by their own “behaviours of concern”: what they said/did when their frustration got the better of them. The course gave them a better understanding of what the person with dementia was going through, and strategies to respond in ways informed by that understanding. However, it gave them no strategies for dealing with their being “changed into a person (they) no longer liked.”
    I’m told that as a “carer” I (1) need to schedule regular respite time-outs; and (2) could benefit from a course on carer grief (conducted by Alzheimer’s Australia).
    However, something like “The mindful carer” would be more useful to those of us who are “carers”. It could help me to carry my significant “behaviours of concern” (especially those I am not aware of) with more awareness – and hopefully free me up enough to notice them and keep them to myself without burdening my wife with them.

    • Helen, I totally agree. I wish I could’ve ‘fessed up to my own behaviours & fears 3 years ago. My GP offered counselling sessions but I had no way of attending anything at the time. Alz Aus couldn’t help after hours.

      Your wife’s lack of treatment after her stroke is the sort of thing I hope we will document in the future. Indirect discrimination has to stop…as does ignorance about enablement.

      I complained via our YOD KW about the Alz Aus counselling service: after finally organizing to get away from home for a few hours I was told “We don’t do enablement planning, as for people with disabilities, we do adjustment to the grief of a terminal diagnosis.”
      Needless to say I never returned.

      I stopped having coffee with our Dementia Advisor RN because each conversation started with “So have you organized for V to go into respite yet? You should both start getting used to it soon”. When I finally told him we had no intention of doing anything but organize in-home services he was horrified! I got the finger wag.

  10. Thank you Kate for addressing this important topic. It was one of the major themes emerging from my research exploring ‘stress’ as experienced by people with dementia, i.e. families can bring stress. As you so clearly express, I found people with dementia understood very well that much of the over-protective monitoring and undermining of independence they experienced was well intentioned but nonetheless potentially very harmful. Of course, when there is no mal-intent, it makes it all the more difficult to talk about but the scale of potential harm to all concerned and conversely, the positive impact of understanding each other better and strengthening relationships makes it important that we do.
    Barbara Sharp

  11. Well said, Kate. At Daughterly Care we know that most of the so-called ‘behaviours that challenge’ are caused by inappropriate ‘care’ and ‘support’. More training is needed on how to NOT cause ‘behaviours that challenge by not providing care and support that frustrates people with dementia’. When Laura Hill provided brilliant training on this topic I sent our Caregivers to every session, alas she has returned to the UK. Kate Lambert, CEO, Daughterly Care

      • Yes, we could Kate and in time we will. Infact, Laura Hill used to say “Daughterly Care are my people” what she meant by that was that we totally got her point of view and understood what she was saying.

        It was fascinating attending Laura Hill’s 2-day training on ‘behaviours that challenge’. In attendance were staff from public hospitals and nursing homes and Daughterly Care was always the only in-home community care provider.

        Laura’s main job for the Department of Health was to visit hospitals and nursing homes where there was ‘challenging behaviour’ happening and staff were in distress and had called for her expertise. Laura would give us examples of people with dementia displaying ‘aggressive’, ‘inappropriate’ or ‘challenging’ behaviors but as she investigated and took the time to talk to the person with dementia they would very clearly tell Laura WHY they were upset and therefore acting out.

        Frankly, I never heard a story / case study where I wouldn’t have done exactly what the person with dementia did, I thought their reactions to how Laura observed them being treated was perfectly normal and it was the staff who needed retraining and sorting out -*** and that was Laura’s point to her room of attendees*** – many care institutions have systems (insufficient staffing levels), business choices (employing people who don’t speak English well enough and not properly trained to understand dementia or how to relate to people in a way that respect and enables them).

        I referred to Laura Hill as a heroine and would send 10 staff every session she did to reinforce what we know. For someone living with dementia, their quality of life is determined by their quality of enabling support and care. This is most often best provided at home where their environment is familiar and they have control.

        Kate Lambert, CEO, Daughterly Care

  12. This is amazing! It’s a courageous and creative thing to do. I’ll be here with positive vibes, ready to offset any negative reactions. But maybe most reactions will be positive. That’s what I hope for. Regardless, I am eager to hear the feedback.
    Very best wishes, and more hugs.
    Mary

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