How valid are the voices of people with dementia?

a voiceAs a person living with a diagnosis of younger onset dementia, the voice of people with dementia is a particularly ‘hot topic’ for me. I have lived well with dementia so far, and although deteriorating slowly, continue to live well, with many and varied disability supports in place.

When I first started attending events including conferences to learn more about what dementia is, but also about what it is like to live with dementia, the only voices I heard were from people not living with dementia. I would hear how I was feeling, why I was ‘behaving’ a certain way, and ultimately, what was best for me.

This was completely at odds with what I believed to be my human rights and humanity, and simply served to exacerbate the stigma, discrimination, isolation, exclusiveness, ignorance. It completely discounted my humanity and human rights to speak for myself.

You may wonder, how valid is the voice of people with dementia?

From my perspective, it is no longer reasonable to have conversations about, provide ‘care’ or services for, or do research on and about people with dementia without including them fully. That is, not the voice of their family partner or carer, but their own. The phrase “nothing about us without us” which started in the disAbility sector, and then moved into the dementia sector about 10 years ago, has not yet been fully realised, and it is time it was.

Of course our voice is valid, in the same way the voice of anyone else is. We might be a more vulnerable group especially in the context for example, of considering ethics in research, but that is still not a reason to exclude us from research. Our voice is authentic, it is important to the future well-being of people with dementia, and needs to be heard. Even with cognitive or other impairments, our voice is valid. Even if we have lost some ‘capacity’ our voice is valid. After all, it is OUR voice.

We must speak up, speak out, and stand up for ourselves and for other people living with dementia who may not be able to, and I am proud to be part of a global movement of people with dementia from organisations like I Can I Will and  Dementia Alliance International doing exactly that. We must start demanding full inclusion and not only acknowledgement of our basic human rights, but thew right to be heard and our opinions and voice respected and acted upon.

My comments have been inspired after reading the HOT TOPIC in August on the DementiaCare resource and training network

HOT TOPIC: Subjective experiences of the persons with dementia

Matilda Freeman a registered nurse who has worked in aged and dementia care for many years shared two articles which highlight the experience of a person with dementia from their perspectives and the importance of including the person with dementia in their care. If you have time, read the full articles.

Article 1: Von Kutzleben et al, 2012, “Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia, Aging & Mental Health Vol. 16, No. 3, April 2012, 378–390  (This is the link to the abstract)

Here is her summary of the original article: “The wide range of experiences is reported as needs, demands, and coping strategies; most of the reports were of needs. Many of the expressions of needs were not dissimilar to those of people without dementia. Coming to terms with the disease and maintaining normality appeared to be major themes. The need for continuous support and counselling from professional health care appeared to be central. Disclosure of diagnosis represents a critical stage for people with dementia; the findings indicate that they prefer to be included in this process. The importance of communication as a dialogue between professionals and patients, rather than as a one-way process, is highlighted”. The clinical implication of this study included: A change of attitude towards people with dementia is recommended, with a move away from reducing individuals to the observable symptoms of the disease to a more differentiated view.

Article 2: Miranda-Castillo et al, 2013, “The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey”. Here is a direct link

This study reported that “the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them”.

 

13 thoughts on “How valid are the voices of people with dementia?

  1. Here here Kate. I always reflect on the fact that I too speak for people with dementia, however I seek always to use my voice to say ‘please keep people with dementia front and centre of their health care, life, discussions and decisions….’. I have boycotted gatherings ‘about people with dementia’ where the person diagnosed was not welcome, and I seek only to facilitate communications and support the masses to hear the rich voices of people with dementia. I also hope that should I ever misjudge my role or language, that one of my wonderful inspiring mentors (various people I know and adore who have been diagnosed with dementia) will pull me up and take me to task and teach me how I too can play my part more effectively. Thank you for sharing Kate 🙂

      • You know Kate I continue to mull this over. I am always fearful of in any way offending in my efforts to help people with dementia to raise their own voices if they wish to.

        I would like to put it out there that just because I don’t have a diagnosis of dementia does not mean I know nothing whatsoever about this topic. My life’s work is to hear and learn and advocate and expend my considerable energies helping in many and varied ways. One lady in this forum thread has commented ‘It’s like people who speak out for what African Americans need who are themselves white’. This reminds of a childbirth experience that I had. The outstanding midwife who filled me with confidence that everything would be ok and a baby would be delivered safely – was in fact – not a mother. She had learned a great deal through formal studies and by wonderful empathy which made her a vessel of just the skills that I needed at that time. Counter this, a midwife I later found not terribly helpful or supportive was a lady who had had several children and was quite matter of fact and unsympathetic in her approach.

        There is of course never a one size fits all approach to what people want/need/appreciate. As a psychologist I am always looking very carefully for what it is that an individual values and I encourage what it is for that person which will maximise quality of life. I do hope that people with dementia feel empowered to go after what it is that they would most value and that they shout from the mountain tops when there is a place for it. I’ll be there shouting too, always coming from the right place and hoping only to help spread the word even further since we’re all this together and ‘many hands make light work’. I feel sad to think that my shouting alongside people with dementia may ever offend, in the absence of a diagnosis for myself.

        Thank you Kate,
        Denise x

      • Hi Denise, I agree with you and am so glad you have reflected on this point here, and your and other professional ability to understand how to support us, without necessarily having to have been diagnosed with it. Professional support has to work like this, and as with anything, you get some – like you – who are brilliant at it, and others who would do well to change careers! Thanks for caring, and supporting and advocating for people with dementia as well as you do. Kate x

  2. I couldn’t agree more Kate…It’s like people who speak out for what African Americans need who are themselves white! How the heck would they know what they need. It’s as if people think PWD don’t know what they are talking about…Of course they do!!! They are shunned by society just as those with mental disorders are and it is so NOT RIGHT! Everyone has a voice. Keep talking my friend. PWD needs you there to speak out with passion and as we know, it’s why you are here 🙂 Much love…VK

  3. Another great Blog Kate.

    It was interesting to read the Matilda Freeman article – and I was struck by the comment that people with dementia had a great deal in common with others, including others with chronic conditions.

    I agree with this – though I think there is one significant difference.

    We have conducted two pieces of work (2011 and 2012) in which we gathered the views of people with dementia about their connections with their communities. What was really striking for me (coming as I do from a disability rights background) was that not a single person with dementia we talked to cited any barrier to inclusion other than their dementia. Contrast this, for example with the kind of response you might get from a group of younger wheelchair users when you ask them about barriers to inclusion.

    My point is that a view of dementia as a disability, in which one is further disabled by the environment, by the attitude of others, by the inequitable allocation of resources, by stigma – is part of the language, part of the narrative for many people with disabilities (certainly in the UK). This is due largely to the activities and campaigning of disabled people themselves, resulting in, among other things, the Disability Discrimination Act. As a result disabled people are much more visible, you might say “normalised” and have the right not to be unfairly discriminated against.

    ……….in the UK most people with dementia are also covered by equalities legislation, and so, in theory at least have the right not to be unfairly discriminated against.

    BUT – although the language of rights is starting to appear in the lexicon of people with dementia and some of their supporters – it has a long way to go before it becomes part of the lexicon, part of the world view of people with dementia at community level.

    In many respects, people with dementia are now where people with physical and sensory disabilities were in the 1970’s and 80’s – blaming THEMSELVES for their exclusion – and being blamed by others for it.

    Early disability activists had a mountain to climb before their ideas became mainstream – the same mountain that you and those who travel with you are now climbing.

    How’s the view?

    • Thanks for joining the conversation again Steve… I agree we are where the disability sector used to be, and how hard was it for them to claim their basic human rights!!! Oh, and the view is occasionally quite remarkable, but a lot of the time the cloud or huge boulders obstruct my view. That is when my BUB, and friends like SHibley Rahman take over and push me to remember the preferred view! See you very soon!

  4. Hello, seven years ago some researchers figured out and validated the fact that folks living with dementia had some unmet needs and wants that were different from the unmet needs and wants of those living with out the symptoms, many of who were caregivers and treating professionals of those living with dementia. This shouldn’t have been news then, and by now it most certainly should not have been news. Yet it is, news that is to some folks. So here we all go again. The real, true, exclusive experts of living with dementia are those living with dementia. They have a unique perspective on themselves, the symptoms, the feelings, the thoughts, the experiences that come with living and coping with their own disabilities. Not that others who are not living with the symptoms don’t have their own thoughts and perspectives, but shouldn’t we at least first listen to, respond to those living with the symptoms before we rush off making check lists, writing books, giving lectures by others not living with dementia?

    I don’t deny that I lack insight into all my behaviors/symptoms, but come on now, I’m not a piece of chopped liver. I’m Richard. Richard

    • We are people Richard, with our livers in tact hopefully (!), with the same rights… no more, no less… than anyone else. Unfortunately people with dementia have been in the ‘not as many rights as others’ category for too long, and many are bucking the change that is taking place all around the world as we ALL speak up! Love you to bits my friend… x

The only thing missing in this global conversation is YOUR voice... Thank you.

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