Advocacy and activism for people with dementia



This week, it is Dementia Awareness Week in the UK, and I have been publishing daily blogs on the Dementia Alliance International website as part of our contribution to it, in part because we have a lot of UK members, and also to highlight some of the presentations at ADI2015.

The issues or topics facing people with dementia that fascinate me the most, are the ones where advocacy is the hardest. I have never been part of a marginalised group (apart from being short!) until being diagnosed with dementia.

I had no real insight into how difficult change can be, nor how very hard discrimination and stigma is to live with.

But being an advocate for myself, and for others is worthwhile, even though it can attract a few enemies along the way, people who do not like their positions of power or knowledge being challenged, people who have had the voice on the matters that affect us prior to us speaking up, who have been considered the ‘experts’ up until now.

They are still experts in their own right, but they do no, nor should they, consider themselves on the lived experience of a diagnosis of dementia. Just like someone living with cerebral palsy, we too, are the only ones whose voice is authentic.

Watching anything from the sidelines, is simply that. A view, from the outside, but it is not a view from the inner lived experience.

Whilst people with dementia have not taken to the streets like those participating in a physical political rally, we have taken to the internet waves in huge numbers, and so, our advocacy is as much about being activists as being advocates.

We will no longer accept anything about us without us, and will continue to speak up for this basic human right until it becomes a reality.

We want change; we want improved care, respect, our basic human rights and autonomy; we want full inclusion and a voice; most importantly, we are here to stay.

Wikipedia says of advocacyAdvocacy is a political process by an individual or group which aims to influence decisions within political, economic, and social systems and institutions. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research or conducting exit poll or the filing of an amicus brief.

Wikipedia says of activismActivism consists of efforts to promote, impede, or direct socialpoliticaleconomic, or environmentalchange, or stasis. Various forms of activism range from writing letters to newspapers or politicians, political campaigning, economic activism such as boycotts or preferentially patronizing businesses, rallies, street marchesstrikessit-ins, and hunger strikes

12 thoughts on “Advocacy and activism for people with dementia

  1. Pingback: Advocacy and activism for people with dementia ...

  2. Congratulations, Kate

    You’ve earned yourself a place in the history of the world disability movement by including access to the UN Convention on the Rights of Persons with Disabilities for people living with dementia in your list of demands to the recent WHO Ministerial Conference on Dementia in Geneva.

    Nothing About Us Without Us lies at the heart of every Article of that Convention which was written in equal partnership with organisations of people with disabilities –unfortunately, not those of us with dementia. Although people with dementia are clearly included in the CRPD definition of disability, we are being ignored in its implementation (

    The 154 governments that have ratified the Convention have made a commitment in international law to be held accountable for its implementation to the UN Human Rights Bodies whose reports and supporting documents are available on the internet

    Commitments made by the world’s governments at the WHO Geneva Conference now provide a unique opportunity to put dementia on the global human rights agenda. Strong advocacy is now needed to follow through on the lead given by you from the top table at the opening session and later by the unanimous adoption of a strong human rights resolution proposed by Marc Wortmann on behalf of many national Alzheimer’s associations and incorporated in the Concluding Call for Action by WHO Director Dr Margaret Wang.

    We must not allow these commitments to remain empty words. All of us can try to find out what our own governments are doing to make a reality of the Convention for people living with dementia and use every opportunity to refer to it in our networks, in the media and above all when speaking to governments.

    The Convention enables any civil society organisation from a ratifying country to submit an independent report to the UN CRPD Committee which consists almost entirely of people with disabilities.

    There are encouraging signs that the wheel is beginning to turn in our direction. The CRPD Committee are aware of our exclusion and are likely to be receptive to lobbying by the relevant civil society organisations such as Alzheimers Disease International and Dementia Alliance International. A few Alzheimer Societies (e.g. Scotland) are actively pursuing a human rights agenda.

    Here is a you-tube of an excellent presentation to the European Disability Forum by Greanne McGatrick from Alzheimers Ireland – .

    So take a bow, Kate. You may just have started something big. It’s now up to all of us to make sure that everyone knows that the rights of people with dementia can no longer be forgotten.


    • Thank you Peter, for your kind words, your expertise and wisdom. There is so much to do, some days it is hard to get out of bed at the thought of it, but together, we must keep building bridges, and supporting each other.


  3. Hi Kate
    Well said and that is what we are doing here in the UK. Our voice needs to be heard. We are seeing more people at our groups who have obviously had dementia for years but have only just been diagnosed. So something is getting through slowly. Onward and upward.


  4. Pingback: "Nothing about us, without us" - Dementia Alliance International

    • Thanks MB – and our state, in its ‘wisdom’ no longer consider dementia a health priority, and has disbanded the various committees and groups supporting improvements to care in the acute and aged care settings!!!


  5. So Kate, do you see yourself as an activist as well as an advocate? I do.

    As for me, I can only be an advocate, albeit a militant one 😉 Maybe an “armchair activist” if I thought I had sufficient reach. xx


You are very welcome to respectfully join this global conversation.

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.