Being heard

speak upA person’s voice has greater chance of being heard when connected to the voice of others in similar circumstances, and very often, the closer the similarity the stronger the voice.

For people with dementia and the family members who support them or other support people such as neighbours or friends, this has given rise to organisations like Alzheimer’s Australia, Alzheimer’s Disease International, Dementia Alliance International, The World Dementia Council, and other such agencies.

These peak bodies serve as a conduit for information, services and a consumer voice, but have predominantly been the voice of family carers, not people with dementia. The Alzheimer’s Associations/Societies around the world began as family carer organisations, and were initially the sole voice of that group, and in many countries, that has changed very little.

The organisations advocating for us all do still play a critical role in advocating for better outcomes for people with dementia, and for family carers, service providers and also for more or better research.

But they have not really been a strong voice for people with dementia; instead it has often been tokenistic, and sometimes patronising. I’m thrilled this is changing, and although my six month consultancy role with Alzheimer’s Australia ends next week, and is not to be renewed, it has given me some hope for greater change. I really hope others will role model this step forward, rather than take the position that as they have not renewed  my contract after six months, people with dementia are not capable. I am, most definitely, afraid it will be the latter. I suspect ultimately, governments will have to legislate to ensure people with dementia are offered employment, in the same way they have had to for Indigenous Australians in the work place and at universities.

Not having a strong authentic voice gave rise to DASNI in 2001, and now Dementia Alliance International, and it is now, that so many of us are speaking up in unison, joined together by our own advocacy and support group, and also the Dementia Working Groups taking off around the world whose model we have followed, that our voice is becoming more powerful.

As a united voice, we also have a much greater chance of being heard, as we are, collectively, speaking up for the same access to services and better care as everyone else, and not willing to be randomly locked away or drugged up to the eyeballs with antipsychotics or other behaviour modifying medication to make us more manageable for others.

However, it often seems that many carers are not comfortable with people with dementia having such strong voices. We are challenging their beliefs, their language, and everything they thought they knew about OUR experience. This is right, and very healthy, but it also means there will be a lot of feathers ruffled along the way.

Oddly, not wanting to be publicly referred to as ‘sufferers’, seems inordinately difficult for people without dementia to accept as our right. Of course we all suffer, from various illnesses including dementia, or life situations, some of the time. But we are not ‘sufferers’ all of the time, and that word indicates there is not a lighter side to our lives and we are suffering all the time. Even in the later stages of dementia, this is not true.

Of course, we cannot determine the voice of a person living with dementia is more or less important than the voice of a person caring for someone living with dementia [insert any illness or condition requiring significant care], nor for example, that a blind person’s opinion or experience is worse than his deaf neighbour.

I feel we must ensure that organisations don’t discriminates between one type of  experience over another. Although at the moment, globally, it is very much more about the experience of the family carer, as there are many more of them involved as consumer advocates. Article 5 of the United Nations Convention on the Rights of Persons with Disabilities states people shall not be discriminated on the basis of disability, and in reality, all these voices are important, and services should reflect this, but often, people with dementia are still being discriminated against, and our voice is ignored.

The collective voice of carers including professional carers is important – we need reliable access to skilled and flexible service providers and supported family carers – but it’s hard to see how this voice is more worthy of the voice, concerns and rights of people living with dementia. It seems to me, the people most uncomfortable with us having a voice, are the industry caring for us, and many of the family carers out there ‘caring’ for us (not mine, thankfully).

And on the topic of the word carer, I have said many times on my blog, we dislike this term, and use BUB instead; we have cared for each other ever since we fell in love, and my BUB is first and foremost, my husband and best friend. I note in the Kiama Dementia Friendly Pilot Project, they simply use the term supporter, which I like a lot as this can be family, friend or neighbour.

Whatever issues we all have, they are all important, but not one group to the exclusion of the other, nor one more important than the other.

But, people with dementia are collectively standing up for our most basic of human rights; that is, full inclusion in the very things that affect us and matter to us including the language used to refer to us, and to a voice of our own, not the voice of people without dementia who decide how we feel, and what is best for us.

12 thoughts on “Being heard

  1. Kate – reminds me of the “Cancer” slogan that says

    Cancer – a word, not a sentence.

    And judging by what you say above, maybe the same can be said of dementia.

    Personally, I DO think the word “suffer” etc is necessary, because for all of my symptoms are not treatable so I do, indeed, “suffer”. Having said that, I never talk about things so I don’t remember how I described it all the last time I told anybody.

    – But I DO “suffer” from my 24-hour-a-day chronic hunger that barely goes away after I’ve eaten. No treatment is available.
    – I DO “suffer” from 24 hour-a-day severe chronic pain 24 hours a day that stops me doing things. No treatment is available.
    – I DO “suffer” from 24 hour-a-day chronic fatigue that stops me being able to sit up on a chair for much of the day, and stops me being able to get out into the community. No treatment is available.
    – I DO “suffer” from over 20 symptoms, most of which affect my daily lift in a significant way.

    So I WOULD NOT WANT any description to be made that says that people don’t suffer from various symptoms, because then it makes light of them and may end up with people not understanding the true nature of their diagnosis.

    • I agree with you in some ways… as I too ‘suffer’ some of the time, from dementia and other illnesses, but I would prefer to be called a retard than a sufferer, as the latter implies I am always suffering. As always, we each have out own thoughts on words. Some people with dementia really detest it being referred to as their ‘dementia journey’ and say loudly, ‘But I have not got my suitcase packed, and I’m not going on some great holiday!’… 🙂

  2. Kate, I am in awe of what you do and admire your determination and passion. You present but one side of the coin. EOD appears to be so different in its stages and progression to many of the other diseases that have dementia as their core component, and affect mostly older members of our community. I believe strongly that your voice is important and I am concerned that your role is not being extended with Alzheimer’s Australia. The term carer may be one you would prefer not to be used – the Oxford Dictionary defines “care” as ….The provision of what is necessary for the health, welfare, maintenance, and protection of someone or something: My wonderful father by the time he was fully diagnosed with LBD was in need of care and I was his Carer – a role I did not want but was willing to undertake because I loved my father dearly. My father was not competent, he could appear for periods of time to be so but was paranoid. Eventually he could not articulate his requirements and had no voice to protect him, he was vulnerable. I became his advocate. Diseases that have dementia as their central symptom/s appear differently with each person who has a neuro cognitive degenerative disease. We need to remove the word dementia from the discussion altogether as it is a collection of symptoms, not a disease. We need a better way of defining these diseases. You asked me to leave my judgement at the door; however you made mention in your statement about carers not being comfortable with people with dementia (there is that word again) having strong voices. Personally I am comfortable with any one having a voice provided they are competent. You can not know how I feel as a carer of a once strong and independent man reduced by disease to a child like state; no more than I can understand how you feel being diagnosed with EOD.
    I agree that one voice should not exclude the other and all voices should be heard. Those of us who care for a loved ones who have one of the many diseases in which dementia is a major aspect also have a right to be heard; as we are making decisions on a daily basis that affect our loved ones level of care, financial situations and medical requirements and treatment.
    Keep up the good fight

    • Thanks Linda,
      And FYI, although I would have thought you might have seen that here many times, I have been a family carer a number of times, for people with dementia, as well as nursing my mother in law with Ovarian cancer until she died, so I have a reasonable idea of the role you have had/still have.
      Also, I think the word carer strips those of us in that role of our other roles, just my opinion of course. What a dictionary says about a word, and how people feel about a word, can be two very different things, in the same way I am retarded (disabled) now, but we don’t usually use that word as it is offensive to many.
      And regarding my role not being extended with Alzheimer’s Australia, it is indeed, concerning for people with dementia as a whole and has sent a very negative message to the world.
      Another FYI, EOD is more usually referred to YOD (Younger Onset Dementia – i.e. under the age of 65) these days in most countries, as anyone can be in the Early stages of dementia.
      Take care, and keep up your great work.

  3. Kate, a wonderful and thought provoking blog. I hope at least some off your followers understand that we will not move forward without self advocacy, as well as group advocacy. May our future shine brighter by your wisdom. Hugs.

  4. Hi there Kate. Glad to see this today.

    I was excited when I learnt that Alz Aus had employed a person with dementia, you, as a consultant to the Dementia Friendly Communities project pilot in Kiama.

    Rather naively I assumed that this was an ongoing commitment by Alz Aus to ensuring that PWD would be driving all the pilots currently underway in Australia. I also hoped that the Kiama pilot would become a reality within a year, self-sustaining, supported by Alz Aus and modelling best practice for a national rollout, beyond the “pilot” stage, to all communities who put their hand up.

    I expected ownership by PWD, support from the local community and facilitation by Alz Aus and its consumer groups.

    What I see instead is tokenism, and a policy “shift n’shaft” by Alz Aus which has definitively decided me against becoming a member, at least at this time. I’ve joined the Australian Federation of Disability Organizations (AFDO) instead: I believe that recognition (in all contexts) of PWD as people living with disAbilities, and legal action as needed under the Disability Discrimination Act are necessary political steps.

    As you know, I am totally committed to the Kiama project. I will do my darnedest to add my supporter/advocate/activist energies to seeing real outcomes and changes happen locally – for my girl Veda and for the other amazing PWD that I’ve had the privilege of getting to know.

    Please remember that you will always be an honorary member of the Kiama Dementia Advisory Group, and a mentor to me.

    I will be writing to the CEO of Alz Aus this week, to formally protest the organization’s retreat from its public responsibility to demonstrate best practice in consumer advocacy and employment rights.

    Love, hugs and all respect to you, Kate.

    • Thanks Lynda.
      As you say, it is very disappointing is has not been an ongoing commitment, and in my humble opinion, has taken the advocacy and rights of people with dementia backwards by at least five years.
      Like you, I also am involved in the Disability sector, as well as the human rights sector, and will make this a stronger focus from here on to support my advocacy for people with dementia.
      And of course, I will always be an ‘Honorary’ member of the Kiama Dementia Advisory Group, of course, and with great pleasure.
      Love and hugs to you both,
      Kate x

  5. I come from Salford in greater Manchester and there is a person with dementia who is employed by the mental health trust and he is a true asset to their service

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