November is National Family Caregivers Month and National Alzheimer’s Disease Awareness Month. We all want a cure for Alzheimer’s disease, but families who are dealing with the disease right now say that support for their needs is also greatly needed.
Today, more than 5 million people in America are living with Alzheimer’s disease, and more than 15 million family members and friends are providing care for them. These caring individuals provide many hours of their time to keep their loved ones safe and healthy, often putting their own health, careers and retirement plants at risk.
What can our nation do to support these caregivers? Going right to the source, researchers from the University at Buffalo conducted a poll of 700 people with dementia and their caregivers to learn what their priorities would be when it comes to federal funding. Perhaps not surprisingly, family caregivers and those who are already living with the disease said more money should go to providing care and caregiver resources.
In the study, which was published in the Journal of Gerontological Nursing, researcher Davina Porock reported that during 2014, more than $100 million was spent on the search for the cure. In contrast, care support was funded at a rate of less than $2 per person. Said Prof. Porock, “Sure, most people in our surveys would love for there to be a cure, but in the meantime, they have this disease and they need help.”
As their top priority, the caregivers in the survey listed “financial resources for respite care and short-term caregiving support—care that typically lasts less than a week and is used to relieve family and daily care providers.” This type of care not only improves the life of a person with dementia; it also allows family caregivers the time to take care of their own needs.
Financial support for long-term care in a nursing home or assisted living was also high on the list. The families also called for funding for dementia home care for seniors aging in place. They would want increased advocacy and awareness to reduce the stigma of dementia.
The families also called for improved education and training for professional and family caregivers. Experts tell us that tailored, nonjudgmental care helps caregivers meet the person with dementia “where they are,” helping them use their remaining abilities to express themselves and to take part in meaningful activities and socializing. Without this training, a caregiver might try to get the person with Alzheimer’s to conform to “normal” behavior, which causes the person to become agitated and frustrated. The caregiver might, in turn, react in a way that makes the situation worse, so that the person with dementia ends up taking medications that would not be necessary if the proper nondrug approaches were followed.
Finding a cure for Alzheimer’s disease is a worthy goal for our country. But we mustn’t forget that for the millions of people who are living with the disease today, and the family members who love and care for them, care support is desperately needed.