Advocacy as an intervention for dementia

advocacy_roadmapYesterday I placed an updated list of interventions I use in an effort to delay the progression of the symptoms of dementia. This list evolves as I try new things, or as new symptoms appear and more specific interventions are needed. In many ways it is no different to modifying equipment for someone whose physical disabilities are changing through disease or physical deterioration. Hence, I decided to write about advocacy, and why I think it is an intervention for dementia.

Advocacy as a non pharmacological and/or positive psychosocial intervention for dementia works on many levels. As self advocacy, it forces me to work my little grey cells harder, working on developing my neuroplasticity, helping to create new pathways in my brain. To speak out about dementia means I have to read about and research it, research my own diagnosis, take notes, write speeches, practice speeches, and present in public. Speaking in public makes me work on speaking as well as I possibly can, pushes me to find ways to speak well and coherently, to maintain my dignity, one of the reasons I use a speech pathologist. It pushes me into new groups, providing ‘colleagues’, new contacts and new friends, adding to socialisation and significantly reducing isolation.

In line with Professor Martin Seligman’s PERMA Principles, it improves well-being by providing Positive emotions, Engagement, Relationships, Meaning and Achievement, thereby providing positive psychosocial value. It helps me to define myself by things other than the symptoms of dementia. I am therefore more than a person with forgetfulness, or odd behaviour, or a wanderer, or someone who is unemployed and therefore often undervalued. Advocacy gives me a reason to get up in the morning and work on my large list of interventions, in particular because it is meaningful.

Advocating for myself and others with dementia gives me a great sense of fulfilment when I feel like I have helped to bring about any change. This would be missing if all I did was focus on having dementia. Breaking down the stigma and ignorance in our community, within service providers and the nursing and medical communities also gives meaning to my life, as well as helping those of us living with dementia. Advocacy requires a significant amount of physical and emotional effort, and  intent, and lots of new learning. It also can become our ‘work’, replacing the sense of loss from lost paid employment. These things have to be good for us!

In the disability sector, it is generally agreed people with disabilities benefit greatly from learning how to advocate for themselves. The people with dementia whom I have met from around the world who advocate for themselves and for others all seem to have a sense of ease about their diagnosis, not that they are happy about it, but that they are actively trying to do something positive, and positively contributing to the dementia community. It unites us all, as well as gives us a global voice, making our individual efforts more powerful.

Beth from D4Dementia today posted a blog titled Advocacy and dementia – A vital partnership. Obviously ‘great minds think alike’ with us both blogging on the same topic on the same day!! My grandfather used to quip back to that saying, ‘and fools never differ!’ It is definitely worth a read, but written from the perspective of people with dementia needing to have advocates speak for them, when they can’t. This certainly reinforces how important it is that I have been speaking up about what is ‘right for me’ while I still can. I worked hard as an advocate for my father in law, and my friend Michael, thankfully with good results for both of them, but it is one very rough road some days.

To end with, I have looked up some definitions and aims of advocacy. The list of aims really resonate with me, and have clarified more fully why I continue to advocate.

On The Rights of Older People site, The Institute for Family Advocacy and Leadership Development in Australia has defined advocacy as:

“… the process of standing alongside an individual who is disadvantaged and speaking out on their behalf in a way that represents the best interests of that person.”

Advocacy:

  • involves representing and working with a person or group of people who may need support and encouragement to exercise their rights, in order to ensure that their rights are upheld
  • may involve speaking, acting or writing on behalf of another person or group
  • differs from mediation or negotiation because these processes aim to reach a mutually acceptable outcome between parties
  • has no prescribed or clearly determined method. What constitutes advocacy will differ in different circumstances and according to the skills and needs of the individual or group
  • may involve working against established or entrenched values, structures and customs, and therefore needs to be independent of service providers and authorities.

Advocates are not impartial because they work entirely from the perspective and interests of the older person or self). Their role is to assist older people by representing the older persons wishes.

Aims of Advocacy

The common aims of advocacy are to:

  • Increase the older persons control over goods and services
  • Overcome barriers that restrict opportunities
  • Ensure appropriate societal and service delivery responses
  • Protect human rights
  • Ensure a better quality of life
  • Be responsive to and emphasise individual needs and wishes
  • Be oriented towards outcomes for older people
  • Aim for empowerment of disadvantaged individuals and groups
  • Challenge stereotypes and stigma

In 1994 Queensland Advocacy Inc. defined it like this.

There are many definitions of advocacy and much debate exists regarding which one is the most appropriate to use. Having a definition of advocacy is necessary so that we have something to refer to, to check against and to encourage discussion about what we are doing. Action for Advocacy Development uses the following definition, which is based on the work of Dr Wolf Wolfensberger. Advocacy groups in Australia discussed this definition during a National Advocacy Workshop in Sydney in June 1994. Most of these elements were agreed to:

Advocacy is speaking acting, writing with minimal conflict of interest on behalf of the sincerely perceived interests of a disadvantaged person or group to promote, protect and defend their welfare and justice by

  • being on their side and no-one else’s
  • being primarily concerned with their fundamental needs
  • remaining loyal and accountable to them in a way which is emphatic and vigorous and which is, or is likely to be, costly to the advocate or advocacy group

They describe five types of advocacy;

  • Individual Advocacy
  • Citizen Advocacy
  • Systems Advocacy
  • Parent Advocacy
  • Self Advocacy

The Free Online Dictionary simply says;

ad·vo·ca·cy (a-d v -k -s )

n. The act of pleading or arguing in favour of something, such as a cause, idea, or policy; active support.

11 thoughts on “Advocacy as an intervention for dementia

  1. Pingback: Non pharmacological interventions for dementia | Living Beyond Dementia™

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  3. Pingback: Owning your life: Advocacy for dementia | Creating life with words: Inspiration, love and truth

  4. Kate – you said

    “Breaking down the stigma and ignorance in our community, within service providers and the nursing and medical communities also gives meaning to my life”:,

    Meaning to your life.

    The people who are most satisfied with their lives (happiest,….. but not the sugary-type of happiness…….) are those that are passionate about something in their lives ……. or those that have a purpose to their live. Or meaning.

    So by doing what you are doing you are actually much happier than if you were sitting at home, knitting, watching TV and going to play bingo once a week. (or similar things).

    So you’ve been able to learn what most people don’t ever learn ……. how to have the most satisfaction and happiest life you can possibly have. Good on you!!

    (big big hug!!!)

  5. Right on Kate!!!! You are truly a wonder and as your blog says, an inspiration to many! Stay the course. The new world is upon us….Blessings…VK

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