When you hear the next plea for increased Alzheimer’s funding – and you’ll hear a lot of it during the upcoming Alzheimer’s Awareness months, both global and national – your first thought will likely be that the money should go into to find a cure. However, people who already have the disease, as well as those who care for them, may disagree. A recent survey showed that these people feel that more financial resources should be dedicated to helping them live life with some quality. Funding research is fine, but that will only help people years in the future. They need help now.
According to the national Alzheimer’s Association, in 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer's and other dementias. Also, dementia caregivers had $9.3 billion in additional health care costs of their own in the same year, much of it due to the stress of being dementia caregivers.
It’s not that people who have Alzheimer’s and their caregivers want all of the money to go to their cause, but it’s understandable that they are desperate for more help. The cost of caring for someone with dementia is astronomical.
One reason for this is that so much of Alzheimer’s care is what is termed custodial care rather than medical care, and custodial care is rarely covered by any insurance.
Someone must be with the person who has the disease at all times. This means that many spouses have to quit jobs or hire help. Adult children must spread their time between parents coping with dementia and their own children and spouse. Often, children are neglected, marriages break apart.
Through all of the carnage, Alzheimer’s and other types of dementia are not slowed. The person with the disease declines and, after anywhere from three to 20 years dies, leaving an emotionally and financially drained family behind.
A study titled, "National Priorities for Dementia Care: Perspectives of Persons Living with Dementia and their Care Partners," was published in the Journal of Gerontological Nursing and reported on in Medical News Today_._ This study found that people’s concerns focused on receiving both short-term and long-term assistance with care, training and education in providing care and education to the public about lowering the stigma of dementia.
The answer is more funding for prevention and finding a cure as well as caregiving resources. According to AARP’s article “Falling Behind on Alzheimer’s Research,” Alzheimer’s is an “also ran” when it comes to federal funding.
The article states that, “In the intense political competition for federal dollars, other diseases come out far ahead of Alzheimer's. Washington has committed some $5.4 billion this fiscal year to cancer research, about $1.2 billion to heart disease and $3 billion to research on HIV/AIDS. Research funding for Alzheimer's will reach only about $566 million.”
It may seem to readers that, with global concern as well as national concern, Alzheimer’s awareness months never end. We have Brain Awareness month in June, World Alzheimer's Awareness Month in September and National Alzheimer's Awareness Month in November. There’s a reason for that. Our political leaders and the general public need to understand that Alzheimer’s will eventually take down our economy if a cure is not found. The needs of people with the disease and the caregivers will flood our healthcare system in ways that will lower the quality of care for all health issues. This message must be hammered into public consciousness by every method available.
Courageous people who have Alzheimer's disease are testifying before Congress to help convince our politicians to act. We can hope that the needs of these people who already have the disease, as well as those who may get it in the future, are addressed. To not do so is shortsighted and irresponsible.
Carol is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. She runs award winning websites at _ www.mindingourelders.comand www.mindingoureldersblogs.com. On Twitter, f_ollow Carol @mindingourelder and on Facebook: Minding Our Elders