The value of lived experience

I’ve been there.

I’ve experienced the highs and lows of living with dementia.

I am still developing coping strategies as I travel down the road on my journey through dementia. I have learnt lessons during my travails and have found solutions. I have had successes and failures. Ups and downs. I have found ways to navigate The System, come to terms with the changes in my life and adapt to new challenges.

In short, I am an expert in lived experience.

Sadly, I am often frustrated that many professionals in the world of dementia do not seem to understand the value that people like me can bring to their groups. Don’t get me wrong, some organisations like Alzheimer’s Society absolutely see the value of expertise by experience and are eager to take advantage of the skills and knowledge of people like me, and use it to assist and inform professionals, businesses and other people who are living with dementia. The wonderful Dementia Voice people at Alzheimer’s Society keep me and people like me busy by seeking our opinions and using our unique perspective to inform and educate anyone who needs the exclusive worldview that we have acquired through our experiences in living with dementia.

I see the world differently. It’s a simple fact. How could it be otherwise? The wiring of my brain is changing, and thus my worldview is changing along with it. This is something that no one who does not live with dementia can hope to fully understand.

I see things that you do not see.

Cannot see.

I can help you.

Why then do some of you still see people like me merely as people with dementia who NEED help, rather than valued experts who can GIVE help and enhance the service that you provide to people who are newly diagnosed or experiencing problems coming to terms with their dementia?

We are more than helpless victims and people to be pitied and looked after. We are a lexicon. We are an encyclopaedia. We can be an inspiration. We can be guides and mentors.

So why are you not using us more? You talk about co-production, but to a certain extent, you talk the talk but are unwilling to walk the walk. Why is that I wonder? Do you not fully trust us? Is it because we are not “paid professionals”? Is it because we have dementia and are somehow unreliable (that would be ironic)?

Yes, I too need help from time to time. I myself am on a journey, and I am looking for coping strategies. I get most of mine through Consulting my peers. I am lucky to have a network of people living with dementia who are generous in sharing their experiences and hints and tips on dealing with the problems that crop up along the trip (an apt word don’t you think?) through dementia that we are all travelling on, both practical and emotional.

And those very obstacles that I have encountered and overcome have become valuable assets that I want to use to inform and educate others to help them through the ups and downs of their lives.

But I am further down the road than many. I have experienced the trauma of years of misdiagnosis followed by the world-shattering revelation of a diagnosis of an incurable brain disease. I have had those awkward end-of-life conversations with my partner. I have redrawn my will. I have been through the process of drawing up lasting powers of attorney. I know what it is like to experience anger, frustration, self-pity and despair.

I also have the experience of successfully applying for benefits, a disabled train pass, and a Blue Badge to enable me to use a disabled parking slot where I can leave my vehicle with the certain knowledge that I will be able to find it again easily.

I can show people who have been recently diagnosed that they still have value. Indeed, they now possess unique insights that make them special.

I know how to inspire them to step up to the mark and participate in research, fundraising, raising awareness and general advocacy, and I can tell them about the Great feeling of satisfaction and self-worth that these activities bring, and how they maintain one’s dignity.

Conclusion

I have learnt to live comfortably with the knowledge of my own mortality and to find ways to use my experiences with dementia as a tool to educate and inform others, and there are many people like me.

We are an underused resource.

Sadly, I truly believe there is an unconscious prejudice amongst some professionals that prevents them from considering people like me as potential assets who can assist them in the work they are undertaking, and it makes me angry. I want to use my experience to assist others like me while I am still able.

The clock is ticking. I have a lot to offer but I don’t know how long I will be able to offer it.

And the fact that there are still so many people out there who are designing and providing services aimed at people who are living with dementia and their families and I’m not even considering taking advantage of the skills of people like me who are experts by experience is frustrating and deeply saddening.

Co-production it seems is sometimes seen as something designed to tick a box, but not to be embraced wholeheartedly as an integral part of the business.

And that is a big shame as all of us are poorer because of it.

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