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.