September is world Alzheimers Awareness Month, it still amazes me that many people think Alzheimers and Dementia are two separate diseases, when in fact Alzheimers is just one type of Dementia, for which they are finding more and more types all the time, and Covid is predicted to bring a whole new type of dementia on board. In the world of advocating one sits back and wonders and we have many conversations around how after 30 years of advocating, people like Dr. Richard Taylor, ( who by the way I was awarded the very honourable Dr. Richard Taylor Award for my Global Advocacy work), something I am very humbled and honoured to have received. Along with other great advocates like Christine Bryden, James Mckillop and Kate Swaffer to name a few. These advocates, great people, who worked and many continue to work tirelessly to see changes for the improvement in and around all things dementia. When we pause and think about it, we wonder, why it is taking so long to see movement and change. I believe there is many organizations making a lot of money on dementia by keeping the old views and ideals about it alive, so instead of doing and putting money into the things that could and would make a difference, they work hard at just showing that they are doing something to keep people from asking to many questions. I am not one of those people. I believe we need to make them more accountable, from our governments, to our health Authorities to our Dementia Organizations. Often times they don’t want to hear from me because they don’t like, I shouldn’t even say the don’t like, more that they don’t want to hear it, in large part because even they know it has become more about the big business side of things that it is ever about those of us living with the illness.
Change is slow to come it took 30 years for Cancer to become something that wasn’t hidden away, and we stopped hearing terms like ” the C word” instead of saying cancer. It took 30 years of people living with cancer to finally start demanding and insisting on getting what they needed. the resources and supports in place. Do they have everything they need, no put they have much much more than those living with dementia, and some other illnesses. Know we find ourselves in a time when everyone is pulling back on what they are giving, the global issues facing everyone is making it harder and harder and people are also less interested, or perhaps they are not actually less interested they are just “life tired”, coming through the pandemic into world supplies issues, increasingly high costs of living. So even if they want to care even if they would normally like to be involved and help, they simply are out of steam, emotionally, mentally, physically, out of steam.
Where does that leave us, the advocates who want to make a difference for all those living with dementia. We are stuck trying to navigate through times where finding support, volunteers, funding is at an all time, likely never seen before time. Many of us trying to find ways to draw people out to get them engaged, but how do you do that when people are so overwhelmed and fatigued, when someone’s tank is empty its empty and no amount of carrots being dangled make it less empty.
We want and need new voices of people with the lived experience, we want to help them find purpose and hope, and find joy, in meeting others with the lived experience all the while helping to improve things for others. mentoring others is something we aspire to do, so that others have the opportunity to share their thoughts, their stories, to help shape the future for all those living with Dementia. It doesn’t take anything more than a willingness to share, to be open and honest and allow yourself to be vulnerable. What is gained through being engaged is hard to put into words. Life changing, I no longer suffer with my dementia, I no longer fear it, I ROCK IT, it is one with me, my life became full again, meaningful. I have value, I have hope, I have purpose. I want others living with dementia to experience that as well. It doesn’t mean it is not hard, it doesn’t mean it doesn’t challenge me every single day, it doesn’t mean that I don’t have days that I am angry and cry and rally at it, but being engaged has made those days less.
But I fear if we can’t find ways to meet and get others engaged, especially during these challenging times faced buy us all, we will slip further back simply because all those who have been and are working tirelessly will become to tired as well, and we all have life happening for us as well, and we also have our illness which as we know can be very challenging at times and at some point will likely cause and end point in our ability to do the advocacy work, so it becomes a m ore pressing problem and one I think all dementia groups and organizations should be sitting at the table brainstorming with us about how to tackle these topics, they also have a very very large stake in sitting back and doing the same old, and not helping us with these issues. They have much to gain…the trouble is they don’t hear a lot of what we are saying know so how do we get them to hear this.
I also hope that when people are giving they really look and ask questions about how much of what they give actually makes it to help those living with the illness, often the bulk of the funds raised help them campaign to raise more funds to reach their agendas not to help those living with, the big organizations often take the bulk, leaving some of the organizations that are truly providing the much needed services little ability to compete for the donations. Food For Thought, during this Alzheimer’s Awareness Month.