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Earlier this year I was commissioned by an organisation to collect short stories of some of their clients. Len is one of those people and he lives with dementia. It was the first time I had worked with someone presented to me as someone ‘with dementia’. As with all new areas of my work, I reflected on my assumptions and my own stories of dementia (including how it was for my Gran, a nurse who knew what was coming). I also considered how I could apply the ethical Story Seeker™ model when walking alongside someone with dementia.
I learned a lot from Len and am grateful for the experience and the trust he and his daughter gave me. While the purpose of the Homeshare Story Project was to ask participants to share their experience of participating in a Homeshare program, it was also (as always) about helping someone have a voice and be heard.
I valued this experience with Len so much I started wondering if there was more I could do in the area of helping people living with dementia have a voice. My first big realisation was how little I actually knew about dementia and so have been on a journey of learning since.
Last week I attended the Stories of Me Dementia Forum in Sydney. Congratulations to Baptist Care and all involved. I went along with my usual question “How can I as a Story Seeker help?” The following is an attempt to offer my take home notes from what was a full day of both information and emotion. This article will of course not be an exhaustive account of my reflections but I have tried to pull together some of the main points that I hope are useful. My own learning and reflections will evolve as I continue to listen deeply to others.
DEMENTIA IN AUSTRALIA
I found the predicted future statistics around dementia in Australia startling – 1800 new diagnoses per week in Australia (Alzheimer’s Australia 2015). The sheer scale of the numbers means dementia is an issue that will have an impact on every one of us in some way whether as a person with dementia, a person looking after someone with dementia, supporting a person who is looking after someone with dementia or someone providing a service for people with dementia. And of course the national economic impact will be a political issue that will continue to grow with our ageing population.
I think it is easy to see how dementia has become a topic with problem-saturated and deficit-focussed narrative. This means dementia is often seen as synonymous with overwhelm, trauma, burden, strain on individuals and service industries. I’m interested in the idea of exploring other narratives such as strengths-based and externalised stories of living with dementia.
My repeated use of the term ‘person with dementia’ is deliberate. As with all categorisation of people, language matters. Putting the person first implies the following descriptor (be it dementia or other) is one element of that person’s life. I continue to use this term across the board in an attempt to acknowledge that a person’s identity is made up of more than the issue being discussed.
As an “expert of the lived experience” of younger onset dementia Kate Swaffer spoke eloquently and with purpose on living with, treating and advocating for people with dementia including of the importance of language. I learned so much from Kate’s presentation and can only hope I am doing her work justice in what I type here. I recommend you read everything you can get your hands on by Kate Swaffer and listen deeply as her personal and professional experience combined with her natural intellect and warmth will enlighten you I promise. On language, Kate suggests we use the same expected respect given when discussing other experiences of living with disabilities. In Australia we have laws about how we refer to people living with a disability and their rights and so I was somewhat surprised to hear this is an issue for people living with dementia. Obviously this needs to change.
A common theme throughout the forum was that people are more than their diagnosis. Personal accounts from people with lived experience and caring for loved ones with dementia highlighted the need for stories of identity pre-diagnosis. Gaining an understanding of who this person is enables those around them to see them as a person first which leads to more respectful and genuine interactions. It also gives important information on a person’s interests and abilities, which can inform decisions on appropriate assistance etc. We must never forget people are people first and not their diagnosis.
However, we must also remember that our identity stories are ever changing for ALL of us and so we must also not restrict a person’s opportunities to seek new interests throughout our lives. The importance of trying new things was mentioned a lot throughout the forum with benefits seen from prevention through to potential breakthrough treatments. These included stories of music therapy, virtual reality travel and engaging with animals.
GRIEF AND LOSS
If we acknowledge the importance of identity to our quality of life then it stands to reason that a loss of identity through symptoms of dementia (or a fear of loss through diagnosis) needs to be addressed. Again, if we then see a link between diagnosis and symptoms with grief we can understand the benefits of grief counselling principles. Feelings of shock, disbelief, anger may or may not be present by all people involved (the person living with dementia and those around them) and yet the meanings made of the experience will be unique to each individual.
“Help us to remain engaged with our pre-diagnosis life, rather than a Prescribed Disengagement®” Kate Swaffer
SHARED LIVED EXPERIENCE
Understanding ourselves and gaining understanding by others is very important to us humans. By reflecting on, articulating and sharing our personal insights we can connect with others who may be going through a similar experience which in turn leads to a sense of greater understanding. Kate Swaffer suggests “it’s really important we [people living with dementia] tell our stories to each other.”
I have seen the profound benefits for people connecting through stories of shared experience and I see no reason why it wouldn’t translate into this area also.
The sharing of personal accounts can be of benefit to those living with dementia. It can also become a powerful advocacy tool – on an individual and collective level. Self-advocacy may be assisted through guided storytelling activities. Family members may find it useful to have such personal accounts on hand when liaising with professional support services. On a much larger scale, personal stories are not only popular but very powerful advocacy tools on a much larger scale for community education and policy influence.
HELPING PEOPLE LIVING WITH DEMENTIA TELL THEIR STORIES
Do I genuinely believe we can we make a difference by helping people living with dementia share their stories? As with many other areas, I genuinely believe it is not a question of IF we help people tell their stories but rather HOW we go about it. As always, I ask others to be careful in this work. At the same time I do not adhere to the gatekeeper mentality of not giving the opportunity to share stories in the fear of traumatisation. Neither jumping in or abstaining is the answer.
Well-considered, ethical and powerful story collection is what I advocate and the area of dementia is no different. Therefore I believe, if done with the strengths-based community development, narrative therapy and storytelling principles found in the Story Seeker™ model, helping people living with dementia will indeed be helpful. In fact I believe it will change lives.
“It is not enough to ask the questions.
We need to be ready to listen deeply to what people living with dementia have to say, and take action.”
HELPING PEOPLE SHARE THEIR STORIES THROUGH THE STORY SEEKER™ MODEL WILL:
- Reduce dementia stereotypes and stigmatisation
- Improve the wellbeing of individuals living with dementia
- Improve the wellbeing of individuals and groups in contact with people living with dementia
- Inform the dementia industry
- Influence dementia service training, guidelines and procedures
- Provide ethical and powerful advocacy tools for the rights of people living with dementia
- Educate, and therefore raise the awareness throughout, the Broader-Community
- Encourage a dementia-inclusive society
YOUR STORIES & HOW TO HELP OTHERS TELL THEIR STORIES
I am looking for opportunities to bring tailored storytelling projects to care facilities in ACT/NSW to help give people living with dementia be heard. If this is a program your organisation would be interested in booking, or sponsoring please feel free to contact me.
If you are living with dementia and would like someone to walk alongside you as you explore, articulate and share what you have to say in a 3 minute digital story, I’d love to hear from you. In person and Skype sessions available.
Story Seeker™ training for workplaces and individuals are available at http://www.engagingsolutions.com.au/training/ .
EMAIL: firstname.lastname@example.org PHONE: 0422 690 827.
Here are some resources I have been enjoying while gaining more understanding of dementia.
- “What the Hell Happened to My Brain?” Book by Kate Swaffer
- “Living Beyond Dementia™” by Kate Swaffer
- “Types of Dementia” fact sheet by Alzheimer’s Australia
- “Alzheimer’s Australia Dementia Language Guidelines”
- “Alzheimer’s Can We Prevent It?” ABC Catalyst television episode
- “Music On The Brain” ABC Catalyst television episode