As 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”.