Solving Dementia: It’ll Take a Village

informative book on dementia

“Solving the puzzle of dementia will take a village.”  Dr. Tia Powell wrote this in her 2019 book, Dementia Reimagined, and it’s no cliche.

The number of people diagnosed with dementia is on the rise. More of us are over 65, the greatest risk factor for dementia, and we’re living longer. The pharmaceutical industry continues to struggle to find drugs that can delay or halt progressive dementia while scientists and engineers work to improve imaging and other diagnostic technologies.

Despite many decades of research, dementia remains a complex public health challenge affecting 50 million people. We’re simply not prepared for it. To understand how we got here and what needs to change, Powell’s book is a good place to start.

According to Powell, “We are trying to science our way out of the problem of dementia. We invest billions in finding magic pills so we can avoid the expense of caring for those who have it. We already know there won’t be a cure in time for millions of baby boomers.”

Powell calls for more focus on the current reality of dementia care. What’s needed? A plan for care that is “empathic, affordable and flexible.” A viable strategy to pay for long-term care. An approach to care that “combines care with comfot, choice and dignity.”

She points out that the vast majority of care for people with dementia is provided by unpaid family members who lack awareness of or access to caregiver training or support. Counseling and support groups have proven successful in helping families focus on quality of life and navigate the difficult journey of caring for a loved one with dementia. Caregivers, she notes, can become isolated along with their loved ones. Friends may fall away. The responsibility and cost of caregiving sometimes requires family caregivers to leave their jobs to provide ’round the clock care.

Along with memory issues, Powell writes of the behavioral changes that come into play. As dementia progresses, a person may become uncharacteristically apathetic, irritable, aggressive or depressed. Our natural tendency as caregivers is to offer logical explanations even while loved ones are losing the ability to reason, relying instead on what they’re experiencing from moment to moment. We must learn to step into their reality and focus on their need for love, comfort and safety.

Neurodegenerative diseases are complex, often affecting multiple regions of the brain. In the best of situations, dementia patients can benefit from coordinated care provided by some combination of a primary physician or geriatrician, neurologist, psychiatrist, occupational and speech therapists, case worker or patient care coordinator, and especially, palliative care. A well-facilitated caregiver support group provides a safe place for family care partners to express concerns and frustrations and to learn from others who are farther along on the caregiving journey.

With each passing year, dementia will touch more and more families. According to the Global Burden of Disease Study led by the University of Washington, the number of people with dementia is expected to triple by 2050. As Powell said, it’s going to take a village to solve dementia.

As a society, the better we understand dementia, the better our collective response to it, for the benefit of our families and friends.

Tia Powell, MD, is Director of the Montefiore Einstein Center for Bioethics in New York City. To learn more about her book and her work, visit tiapowellMD.com.