I had a few “Aha” moments this past weekend that made me realize just how prevalent the fear of dementia is in our society, and how we must redirect our thinking in order to transform how we look at Alzheimer’s and other forms of dementia.
There are two sides from which this fear is bubbling. The first is the 10,000 boomers a day who are turning 65, often seeing their parents or other loved ones cognitive decline and living with a halo of terror that this might happen to them. The other is fear of the unknown by caregivers, families, and society. By this I mean the fear of how to communicate with some who has dementia, the fear of caring for them properly, fear of their behaviors.
One of my “Aha” moments this weekend was listening to a couple – care partners – both talking about their journey with dementia. The husband who is living with Alzheimer’s Disease (AD) talked about his lifestyle. He exercised, was physically active, maintained a healthy weight and diet, had a college degree, maintained strong social connections. He checked off everything on the list that we are told may stave off dementia. Yet he was diagnosed in his 60s with Alzheimer’s disease. Living now 8 years with AD, he spoke to a crowd and with the help of notes and a few small prompts from his wife communicated his heartwarming story and message about still living life and being able to live it with joy.
I’m one of the baby boomers who witnessed two parents with dementia – one from Alzheimer’s Disease and another from Parkinson’s Disease. My journey certainly did change my life from caregiver to activist. I suppose there are times when I think about what my future could hold, but in the meantime – I do all I can to take care of myself. I pay attention to my physical, emotional and spiritual health and all that encompasses those goals. My mission is to help other caregivers through their journey from fear to transformation. While it’s not easy, I am living proof that it can be done, and I’ve seen hundreds and thousands of others do the same. Facing their fear by redirecting their thoughts and actions.
The other fear is one that is even broader, more serious to society’s acceptance of dementia, and requires urgent attention from stakeholders in this arena. That is the fear of the unknown. My other “Aha” moment this past weekend was in talking to the Senior Adult director at my church. She told me how her well-meaning volunteers visit members of the church in care facilities and those who are home-centered. They often become frustrated because they don’t know what to say or how to talk with someone who has cognitive decline. Sadly, because they don’t have the tools to overcome their fear they chose to serve in another ministry.
Family and professional caregivers, employers, those who serve in retail, banking, airports, financial and insurance services, customer service industries need dementia awareness training and even more so, need to be empowered with tools to better understand, communicate and compassionately guide and care for the explosive growth of persons living with dementia.
Fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen. Awareness, education, and training can overcome fear.
I’m thankful for being a part of this movement to help others transform thoughts, feelings, and actions about and for those living with dementia. By doing so, my concerns about my future with or without dementia are thwarted by the fact that I am confident that the future will continue to improve for those living dementia, their care partners, families, and most importantly society’s stigma about dementia will be transformed.
Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them. Pam is the creator of the internationally acclaimed Dementia Live® Simulation Education and Training Program.