November is National Alzheimer’s Disease Awareness Month and each year at this time I reflect on the new information and experiences that impacted me over the past year. After 30 years of working with people living with dementia and their families, I find I am still learning every day. This year’s lessons were powerful ones, but the main takeaway is this: It is possible to live a good life with dementia.
I believe there are two major components to living well with dementia:
- Understanding that a dementia diagnosis does not change a person’s identity. If you know someone living with the disease, get to know them. Honor their life story and learn about their preferences, personality and skills.
- Having open and honest conversations with your loved one living with the disease. What are their fears? What do they want for their care as the disease progresses? Knowing the answers to these tough questions will help you plan for their care in the future.
I am reminded of this when I visit Brookdale residents. I’ve had the distinct pleasure of knowing thousands of people living with dementia in its various forms and stages – each person with a distinct and unique life story, set of values, skills, talents, knowledge and experiences. I’ve met an astronaut, someone who worked in the White House for more than four presidents, a music legend, one of the first female PhD biochemist in the U.S., and so many others. Knowing them and understanding who they are beyond their dementia certainly helped me understand the importance of knowing and respecting someone’s life story. I believe knowing them can help us all better understand how to live well with the disease.
In these relationships, I am impacted by common themes that rise up in their stories; resilience, not sweating the small stuff, accepting help when you need it, relying on your strengths and not focusing on what can no longer be done, laughter and the importance of being well-known, accepted, and understood by those around you.
Last year during November, we published this Care Partner Journal to help care partners capture the information needed in their supporting role to someone living with dementia. This year, we designed a journal for people living with dementia that reflects on the themes mentioned above. We hope the journal is a helpful instrument for anyone living with the disease to share their hopes and wishes for care with their loved ones and care partners.
I recommend using this journal as a conversation starter and a tool for facilitating discussions about how life should be lived now and as the disease progresses. Take time to discuss what’s changed because of the diagnosis and what needs to remain the same or even get better in order to live well with dementia.
Sometimes as well-meaning “caregivers” we are so focused on the provision of support that we forget to find out what matters most. It is only when we know what matters most to someone living with dementia that we can truly become a care partner.