Although my wife passed away last year after her ten year battle with Alzheimer’s disease (AD), as a former spouse caregiver I will always remain an advocate for improving the diagnosis and treatment of people with Alzheimer’s. Here is my wish list to improve the lives of caregivers as we begin a new year.
1. I wish that our government provided much more money for AD research to find ways to prevent, effectively treat, and cure this horrible disease. If we funded AD research at the level we fund research for cancer and heart disease, perhaps we could come up with effective treatments sooner and maybe even learn how to prevent Alzheimer’s disease.
2. I wish that there were more support groups designed solely for AD spouses. Most AD support groups are open to all caregivers, but spouse caregivers have unique mental, emotional, and financial needs. Spouse caregiver groups should be able to meet weekly when possible, but at least on a biweekly basis. For a spouse with a pressing need, waiting one month to discuss that need is much too long.
3. I wish that national and local AD organizations provided support groups designed exclusively for recent AD widows and widowers. Whereas there are some support groups available to all widows and widowers, those for AD widows and widows are few and far between. Organizations already providing support groups for AD spouse caregivers should continue providing support for those same caregivers after they lose their spouses to AD.
4. I wish that there were more social daycare programs specifically tailored for those with AD. Generic daycare programs for seniors are fine, but too often they are staffed by personnel who have had no training for how to deal with those seniors with forms of dementia. Ongoing staff training should also be provided at assisted living facilities, nursing homes, hospice, and any other facilities where people with AD receive care.
5. I wish that there were more social daycare programs with extended hours for those with AD. Caregivers who are still working or who simply need more respite time would have a lot less stress in their lives if there were more available programs that begin early in the morning and end later in the evening.
6. I wish that more high profile entertainers, athletes and professional sports teams “adopted” their local AD organization as one of their favorite charities. Promotion of local AD organizations through public announcements, charitable events, and annual gifts by high profile public personalities would raise the visibility of AD organizations and possibly encourage more gifting and support.
7. I wish that local AD organizations more extensively explored “partnerships” with neighboring town senior citizen programs to seek greater local, state, or federal funding grants to support more local AD programs.
8. I wish that local AD organizations distributed brochures describing their programs to the local offices of general practitioners, internists, neurologists, geriatric psychiatrists, memory disorder clinics, hospitals, and anyone else in the medical field working with patients who may be experiencing AD. Doctors should give these brochures to their AD patients and caregivers, and also have brochures available in their waiting rooms for anyone worried about AD or memory issues.
9. I wish that local AD organizations sold items with their logos on them (shirts, sweatshirts, baseball caps, umbrellas, shopping bags) so their “advertising” would alert others both to their existence and their availability to help caregivers.
10. I wish that all doctors who prescribe AD medication would become more knowledgeable with the research on the efficacy of those meds and avoid automatically renewing prescriptions for costly AD medication that cannot possibly be effective anymore, if they were even effective at all for the first year or two. Money spent on ineffective medication could be much better spent on other patient and caregiver needs.
If you would like Dr. Vann to respond to questions or comments about this article, please email him directly at firstname.lastname@example.org. You can learn more about his journey with Alzheimer’s at www.allansvann.blogspot.com where you can also read his articles that have been published in caregiver magazines, medical journals, and in major newspapers. All of his columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann.
Published in Today’s Caregiver, January/February, 2017,pp. 14-15.
Access online only at: http://www.caregiver.com/magazine/digital/caregiver_jan_feb17/8B998B3E5DB3BD1337AC6BF4C9011