A Guest Post by Amy Goyer
Anyone who has ever encountered someone who has dementia, much less been involved in the intense care for or a loved one with the wretched disease, has three thoughts that permeate his or her mind:
- First, pleading: “Please, please don’t let it happen to me…and if it does let there be a cure.“
- Second, reality: “Who will care for me if I do develop dementia?”
- Third, fear: “How am I going to amass enough money to pay for my care?”
I was first a caregiver for my grandmother who had dementia and now for my Dad, who lives with Alzheimer’s disease, a common form of dementia. I have these thoughts on a daily basis, and I know I’m not alone: 25 million people are projected to develop dementia by the year 2050 unless we find ways to prevent, treat and cure it.
Who will care for these people? What will be the personal, medical and economic impacts of this surge?
Recently, I participated in a TEDMED Google+ hangout chat about the dementia tsunami headed our way. I was encouraged by the robust discussion of these and other key questions by experts, doctors, researchers, service providers and caregivers. Not because there were answers to all of these questions, but simply because the discussion was taking place.
Those of us who work in the field of aging have been riding our virtual horses through the night shouting, “The boomers are coming! The boomers are coming – and they’re bringing dementia!” for many years. Some in the medical community have also been sounding the alarm. In fact, it’s not only the boomers. By 2050, Gen Xers and even Generation Y will be in dementia range.
Now, by shining a light in the darkness on this critical issue, TEDMED is helping to create the only thing that will really change the course of the dementia tsunami: public demand. We must, as a society, reach that “I’m mad as hell and I’m not putting up with it anymore” stage that creates an overwhelming energetic shift. That shift is what it takes to increase research and treatment options for dementia, as well as affordable care for those who have it and support for those of us who take care of them.
Experts in the Google+ hangout shared their perspectives and some key issues in the chat:
- About 1 in 8 older Americans have Alzheimer’s disease now (one form of dementia).
- At this time, some medications and treatments can slow certain types of dementia for some people, but nothing stops it. Nothing. There is no cure.
- The National Institutes of Health spends only about $500 million a year on dementia research – much less than other diseases.
- Less than 1% of nurses, physicians assistants and pharmacists are trained in geriatrics, yet 26% of their patients are geriatric. There is a dearth of geriatrician physicians (geriatricians) as well. There are simply not enough medical professionals who are trained in dealing with the diseases of old age (including dementia) and the necessary unique treatments and approaches for this population to meet the demand.
- Family caregivers are bearing the bulk of the burden of care and will do so increasingly in the future – many without connections to resources and supports that are in place. Caregivers for those with dementia have higher rates of depression and other health problems themselves. More funding for training and supporting family caregivers is needed.
- More people need to participate in dementia research – but caregivers of those who suffer from it are generally so exhausted and overwhelmed we often can’t get it together to register our loved ones or ourselves to participate in research.
From my perspective as a primary caregiver for both of my parents who live with me, a full-time worker, and an individual who probably has a strong likelihood of developing dementia myself some day, I could feel horrifically hopeless. What keeps me from falling into the abyss of fear? Taking action. I choose to do something about all of this; I do my part in creating that necessary energetic shift.
I do so personally, by making the necessary sacrifices in my life so that I can ensure my parents are getting the best possible care and by taking a relentless approach to doing my homework, asking questions of their health care professionals, leaving no stone unturned when it comes to possible treatment for dementia and their other illnesses. I also honestly share my own personal caregiving experiences in my blog and other forums. Professionally, I take action by raising awareness and helping other caregivers – in particular through my work with AARP and the Ad Council as a spokesperson for their caregiving campaign. We are working hard to connect caregivers with much needed supports through the AARP Caregiving Resource Center. It’s a big job and it will only get bigger.
Whether you are a doctor, researcher, lawyer, nurse, family caregiver or an individual who doesn’t want to get dementia – do something. Keep the discussion going. It’s better than sitting back and waiting for the flood. In the TEDMED chat, expert leaders and participants all agreed on one thing: we must advocate for those with dementia – they can’t advocate for themselves. I might add that, truth be told, when we advocate for prevention, treatment and a cure for dementia, we are actually advocating for ourselves too. The tsunami is coming, and you never know if you will be in its path.
I look forward to more pointed and hopeful discussion about caregiving and dementia at the TEDMED event in Washington, DC coming up April 16-19.
Follow Amy @amygoyer and on Facebook.