In April 2012, the New York Times Well Blog posted an article and photo essay about a book by my friend Cathy Greenblat. Cathy is a photographer who has traveled the world, taking photographs of people in various stages of Alzheimer’s disease, who appear to be enjoying life, along with the caregivers and organizations that support them in achieving enjoyment. Her full-colour hard cover book of photos and supporting text, entitled “Love, Loss, and Laughter” was published in March 2012. Overall, Cathy’s book presents Alzheimer’s disease and other forms of dementia in a realistic yet positive light, but the images in Cathy’s book are not the way some people think about Alzheimer’s.
The comments from readers of the NY Time article The Faces of Alzheimer’s and also on Facebook pages where the article is “shared,” indicate some readers are having a hard time thinking of dementia with any amount of happiness or joy. Typically these readers are caregivers who have witnessed their own loved ones suffer from the disease. For sure, there are many people who suffer very badly with dementia, and there is little to no joy to be found, and I do not want to be accused of preaching to the caregivers in these situations. But for the most part, people in the later stages of Alzheimer’s and other forms of dementia are able to participate in a number of activities, finding purpose and joy in their lives. But why doesn’t this happen for everyone? Why are there caregivers who report nothing but anguish and suffering? Why are there still so many people with dementia who are just sitting around and watching the TV? I think this happens for a few reasons.
First, our preconceived notions of what Alzheimer’s looks like — the “long goodbye.” While I am no doctor (I have a business degree!), there are various types of dementia. Each person with dementia experiences variations of the symptoms. People cannot be pigeon-holed into stages, where certain symptoms and deficiencies can be expected to manifest themselves. Thus, people experience different symptoms at different times after diagnosis, but typically do not follow exactly the same path for exactly the same amount of time. Thus, we have people who live for just five years after diagnosis, and people who are still functioning fairly well all things considered, twenty years after diagnosis. The caregiver, post diagnosis, should not think that the diagnosis is an immediate death sentence.
Second, what we are TOLD and SOLD about Alzheimer’s. The thought that one could live a happy and purposeful life with dementia is only starting to make the news. Last year a video clip called “Alive Inside” went viral, and there have been others showing how people in the deepest symptoms of dementia can be reached and “brought back to life.” Now we have Cathy’s book. So, while there are professionals and specialists, along with some enlightened care homes and organizations that have come to the realization that people in the later stages of dementia are capable of living a purposeful life, the news is only just starting to filter down to the rest of us. People like Cathy are helping to make that happen.
Third, The Cure. The focus up until now has been on finding a cure. We are a “magic bullet” society; we want a cure and we want it now! But a cure is not on its way, not now, not next year, probably not in the next 10 or 20 years, especially with the pitiful funding that most countries dedicate to research. But what DOES seem to be working are what are called “psycho/social” therapies, or “nonpharmaceutical” approaches to slowing the progression of the disease. These include music therapy, art therapy, pet therapy, reading therapy, exercise, diet and more. Here are just a few examples:
- In Australia people with dementia are actively engaged in volunteering for various organizations.
- In Canada, a group of people in later stages of dementia are given an art education class where they learn (yes LEARN!) to paint.
- In the New York area, residents of a memory care unit organized a food drive.
- In Cleveland, Dr. Peter Whitehouse and his wife Cathy engage the elderly with dementia as educators at The Intergenerational School.
- In her book, Cathy Greenblat shows people in France enjoying a visit to an art gallery.
- In the UK, Dementia Adventure is taking people with dementia out for organized adventure vacations.
Here at Mindset Memory Centre, a group of people with early onset/early stage dementia have contributed to and will perform a scripted reading based on their real-life stories (thank you Maureen Matthews of To Whom I May Concern). They have learned how to use two different video conferencing software, including a perilous journey into the world of Google Hangouts. One lady diagnosed with early onset Alzheimer’s is my technology guru, helped me figure out the technology to start our first online support group via video conferencing for people with dementia. Another lady with PCA is working on a storytelling project — an innovative way of gathering data from people with dementia and caregivers as input to improving services.
Incidentally, although these therapies are seeing success, they receive little to no funding.
What needs to happen is for family caregivers to open their minds to the possibility that their loved one with dementia (be it Alzheimer’s, vascular dementia, frontotemporal , Lewy Body or whatever) can do MORE. Caregivers must challenge themselves to look for ways in which their loved ones can participate more in life. To do this, caregivers need to be proactive and they need to be enablers rather than disablers.
What people in the more advanced stages of dementia lack is the ability to express what would bring them pleasure, the capacity to plan out their day, to say: “You know what dear? Today I feel like visiting an art gallery.” (Alternatively, perhaps we caregivers and professionals have yet to understand how these desires might be communicated.)
Instead, caregivers need to try different things and see what works. Read a picture book. Plug in an iPod loaded with their favourite music. Visit the SPCA and pet some cats. Try painting or colouring. Sing a song together. Put a drum in front of them and a drum stick, and play along on another instrument. Adapt a favourite game so that both of you can participate in playing. Once you start looking, the possibilities are endless.
Trust me, it can be done. We did it with my mother, wheel-chair bound with vascular dementia. The biggest barrier to a person with dementia participating in activities he or she might enjoy are the people around that person–the people who make the decision whether or not to enable the person with dementia to participate. Caregivers are the gatekeepers to how the person with dementia is allowed to spend their time. So when you think about how your loved one is going to spend their days, do so with a view to figuring out what capabilities are going unused and what might bring a smile to his or her face.