A Fully Spectacular Life: Ending Misconceptions of Dementia

In a recent blog post I wrote “We are (those of us living with dementia) very aware of our end stage of this journey; we fight hard every day to live the best lives we can until then.” In opposition to what the world perceives, my experience has been that people living with dementia are often happy, bright, and engaging, and share in laughter and joy.

Antiquated attitudes and treatments along with stagnated beliefs about people living with dementia are no longer valid. As with other illnesses, science has gained great insight into this terminal illness, and once we are willing to examine old thoughts and misconceptions, we have the ability to change the stigma.

Old beliefs, views and opinions can morph into movement, renewed understanding and better basic care. For example, in years past families tried to hide early symptoms, secluding their loved ones within the family, not seeking diagnosis out of the ‘fear of dementia’. We know now that people are being diagnosed earlier if they seek answers when they notice symptoms.

It is time we throw out the old belief system. Education is paramount for both the general public and medical community. As viable and participating citizens, people with dementia no longer choose or allow ourselves to be hidden away. We have so much to offer and with the right supports we can and should be active, engaged, contributing and living fully within our communities.

People with dementia are often stripped of our careers, unlike those with other life altering illnesses. Canadian Human Rights state that employers have a duty to accommodate; with the help of Occupational Therapists and other professionals, to make modifications that allow a person with a disability to continue working. This accommodation not given to those living with dementia and this has become a human rights issue. Sometimes the person living with dementia is asked to work without pay, as a ‘non-viable employee’, a volunteer, doing exactly the same job.

Too often, mostly out of sheer love and caring, people take over the lives of the person living with dementia, in part because no one wants to see their loved one struggle. This often creates real life situations that can cause rapid decline. Although completely induced by love, misguided by outdated information, this can suppress growth within the person living with dementia.

Showing how much we are capable of, even in the latter stages can only be helpful if others acknowledge and accept what is reality for us, rather than hang onto and maintain beliefs that are no longer relevant. Believing that dementia is just about memory loss is a huge misconception, it is so much more. There are so many types of dementia, Alzheimer’s, I have Vascular, FTD, Lewy body, etc. Each type of dementia has its own unique symptoms, although types can overlap, and vary in severity.

Education for people to help understand what we are experiencing, what is happening to us physically, mentally and socially is so important. It is never just memory issues. I for example have many, what I term, “Squirrel Moments”. I go from one task to another in a disorganized order, without finishing them one at a time. I am no longer able to multitask or stay focused. This causes a lot of stress in those around us. They try to get us to stay on track, but the reality is, it is better to just let it flow. If it’s not life threatening, it’s not worth stressing over. If it takes me 10X longer to complete my work, it does not matter, what matters is that I am still doing it.

When we can change simple misconceptions such as that, it makes life easier. Keep in mind that dementia effects all aspects of our lives, medically, personally, physically, mentally, and emotionally. Vision issues, incontinence, balance, coordination, swallowing, speaking, fatigue, brain fog, sleep disorders, appetite challenges make memory only one small piece. Yet educating people about how much we capable of, being given the resources to help us continue to do as much as possible can ensure a life of quality. Science is showing more and more how lifestyle, diet and nutrition and rehabilitation all help people living with dementia maintain function for longer.

The misconception, until we have a “cure” there is nothing we can do, is so outdated and harmful. However, understanding that the illness itself is too complex to expect a cure, we can and should hope for some drugs that help us manage the symptoms, just like those with illnesses like Diabetes or MS.

Those with dementia are creating a growing movement for change. We are writing, speaking, sitting on advisory boards, working with research groups and boards of directors for organizations, running support groups and many other events to bring a better life to those living with dementia now and in the future. In many ways we are opening our lives, capabilities and accomplishments to the world, we are waiting for you to join us, acknowledge that we are not who and what you thought us to be.

Our work is questioned by the general public and medical community because they are trapped in the old belief of what dementia should look like. Misconceptions can be fear driven. The face of dementia has changed immensely, you may not recognize it. We will continue to show people how much we are still capable of, to build resources to help those with dementia in our communities to fully live a spectacular life.

Christine Thelker is an Author (For This I am Grateful: Living well with Dementia), Advocate, Activist and Speaker striving to live a spectacular life with dementia. She serves on the Board of Directors of Dementia Alliance International, a collaboration of like-minded individuals diagnosed with dementia providing a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia.