Bill Gates’ recent $50 million investment in dementia research is certainly cause for optimism. His interest in the disease, inspired by a personal connection to Alzheimer’s and his extraordinary commitment to doing good, will hopefully elevate Alzheimer’s to a higher place in the public’s consciousness, and perhaps even inspire other philanthropists to follow suit.
Finding a cure for Alzheimer’s is a public imperative of the highest order. But, in solely focusing on medical research, Mr. Gates has missed an opportunity to make an enormous impact – right here, right now – in the fight against Alzheimer’s.
By the year 2050, it’s anticipated that 14 million Americans will be living with the disease, impacting not only those individuals, but their families, friends, the economy, and our healthcare system – none more directly than their caregivers.
In making his announcement, Mr. Gates said his gift will focus on five key areas including “better understanding how Alzheimer’s unfolds.” How better to understand the disease than to see, firsthand, the impact this insidious killer has on Alzheimer’s “other victims:” the caregivers?
I invite Mr. Gates to spend some time with the 80-year-old husband who cares for his wife of 55 years in their tiny fifth-floor walk-up apartment in the Bronx who now struggles with depression, anxiety, diabetes and heart problems; or with the 15-year-old who rushes home from school every day – missing out on so many after-school activities – to take care of grandpa, so her single mom, the primary caregiver, can go to her night job to keep a roof over their heads and food on the table; or with the dutiful daughter, with four kids of her own, who spends much of her day, exhausted, running back and forth to her mom’s house to deal with her mother’s wandering and dementia-related paranoid delusions.
These scenarios are repeated millions of times every day across our country where, in 2016, 15.9 million Americans provided 18.1 billion hours of unpaid care for family and friends with dementia.
With no prevention or cure in sight, the best treatment we have today for Alzheimer’s is good care. But, caregivers’ needs and their importance to our healthcare system are, too often, overlooked.
A survey of 500 Alzheimer’s caregivers conducted few years ago by New York City-based CaringKind (then known as the Alzheimer’s Association, New York City Chapter), in conjunction with then Manhattan Borough President Scott Stringer, painted a picture of the devastating toll that caring for a person with Alzheimer’s has on their lives, including the financial impact of lost wages, lost jobs, and overwhelming care expenses, as well as personal impacts including increased stress, health problems, and the breakdown of personal relationships.
Some of the alarming data highlighted in the report includes:
- 40% of those who answered the survey said they spend 40 hours or more a week providing care to a family member or friend with Alzheimer’s;
- Two-thirds said they missed work in the last year in order to perform caregiving duties
- Over 17% missed a total of 21 or more days of work year – equivalent to over four, full-time work weeks;
- 43% who earned under $25,000 missed 21 days or more;
- A majority encountered barriers to accessing services including in affordability of care, a lack of available services, or services that don’t meet their needs.
The need for significant investments in organizations and programs that provide life-saving and life-enhancing support to caregivers cannot be overstated. With new philanthropic dollars, caregiver-support organizations like CaringKind could ensure that every caregiver who needed help would know where to find it and how to access it.
What would we do with an infusion of philanthropic dollars?
Helping caregivers requires high-touch, personalized services and planning managed by highly trained and compassionate social workers. We would double – maybe even triple – the number of our social workers who work tirelessly guiding families through the Alzheimer’s journey from the moment they first call our Helpline, to the inevitable grief counseling at the end of the odyssey.
We would increase the number of critically-needed services for caregivers like support groups, educational and training workshops and respite programs. Increasing the capacity of our 24-hour telephone Helpline would be a must. Culturally sensitive programs for NYC’s African American, Hispanic, Russian, Asian, and LGBTQ communities would be enhanced. We’d expand our dementia training certificate programs for paid homecare workers. With new funding, we’d also eliminate enormous barriers to care by moving more of our services into the communities where they are needed most. And a sophisticated, well-financed public education campaign would get the word out to caregivers in every corner of this city.
And this, Mr. Gates, is just the tip of the iceberg.
As I said, we have an opportunity, right here and right now, to make an enormous impact in the fight against Alzheimer’s. We invite all Americans to join us in this fight.