Earlier this week I was interviewed by someone working on a research project, the conversation was lively. She told me they had researched me before asking if I would agree to be interviewed. I’m not sure where or how they researched on me, but I hope it was an interesting search.
We talked about many of the issues and challenges faced by those of us with Dementia and trying to advocate and work to help bring much-needed change. We talked about how many organizations want the people living with to help them campaign, by being the chosen poster person, or by sharing their stories, for which most are happy to do, however, at the same time none of those funds become accessible to the people speaking at conferences, etc. the money instead is used for funding their paid employees to attend, and to pay for offices and business expenditures and wages, she was and said they were aware that this common practice happens. We spoke about the differences different organizations do and mostly do well, but that the one they don’t do is work together on the things that matter and could help those of us actually living with the illness.
We talked about the different things they could do, like sit collectively at the table with people living with dementia, look at the strength and weaknesses of each organization, help each other focus on the strong points, and working collaboratively it would and could then have a positive effect on those of us living with, instead of it being made to look like they are making a difference that in reality, they are not.
As the conversation proceeded and I was asked many more questions by the end she asked me if they were to focus on one thing that would be my number one thing, because we had covered a tremendous list of things and work that needs to be done. I think my list shocked her.
After taking a few minutes to think about it, my response was that if having to choose one for them to work on it would be to change the focus from cure to care, stop trying to find drugs to cure, we know that is likely not possible given all the complex bits of dementia, focus on creating drugs that can help alleviate symptoms, allowing for a better quality of life, start by helping change how a diagnosis is handed out, that medical should cover a complete team of care professionals, Occupational Therapists, ( most jobs to duty to accommodate for any other illness except Dementia), Rehabilitation Therapists, Physiotherapists, Nutrionalists, Life Coaches. Give us the tools and the team to continue to live and work, to have our best life while living with a terminal illness, Stop sending people home feeling hopeless, lost, and alone, in all my advocating, speaking and talking with people living with Dementia, not once have I heard a story of where they were given anything more than being told to go home and get ready to die, so lets change that, let’s start there.
Is it time that we start making our list of priorities visible, we so often feel we are through our advocating and speaking, but maybe we need to a top ten list, and podcast it so far and wide, it can’t be overlooked.