Dementia takes a huge toll on those afflicted with it. But it also has major consequences for those who must care for them, most often family and friends. More than 15 million Americans provide care for loved ones with dementia—tending to a long checklist of their daily, routine needs and ensuring their medical needs are met.
We know dementia care provided by family and friends has big costs: 40% of family dementia caregivers report quitting jobs or cutting work hours. Their physical and mental health suffers. Women are particularly vulnerable to the negative consequences of caregiving because they often bear much of the workload. My grandmother's bad shoulder—so painful that she had to forego air conditioning, even in humid summers—was likely a consequence of lifting my grandfather every day for more than a decade.
What can be done to improve the situation of people with dementia and their caregivers?
At RAND, we analyzed existing national plans on dementia and long-term care and interviewed representatives of the many different interests involved in dementia care. We developed a blueprint with policy options, so all concerned might work together to improve long-term care, especially its delivery, financing and options for its workforce.
A critical first step, we found, involves increasing information and support available to family caregivers and others involved in dementia care. Only half of the patients with dementia and their families receive any counseling, support or information about next steps following a diagnosis.
Attention also should be paid to ways to ease the many transitions those with dementia make among emergency departments, hospitals, nursing homes, home care and hospices, and ensure that family members may keep their loved ones in their homes and communities as long as possible.
Finally, as the population ages and family sizes shrink, the reliance on family caregivers will become unsustainable. Policymakers, therefore, need to find ways to improve the salary, training, work conditions and retention rates among those who get paid for dementia care. Failure to do so may leave the aged vulnerable to poor care or even abuse.
For my Jewish grandmother, a Holocaust survivor, it was a struggle to seek help, and it took a long time before she finally agreed to hire someone to assist with my grandfather's care. It was striking to me that even the strongest woman I have ever known eventually conceded that she could not manage dementia caregiving alone.
The 20th anniversary of my grandfather's death occurred last month, but the condition that claimed his life haunts me still. I worry about my own parents and wonder how I might manage if they need long-term care. I'm secretly afraid I may be a burden some day to my own son. Today, policy plans and proposals still focus on either long-term care or dementia. Our research points to the urgency for action at the intersection of the two: It is time to start tackling the problem of dementia long-term care.