At this point in my life, it is inevitable that people I know have been impacted by Alzheimer’s disease and/or dementia.
A former friend of mine I used to run with has been diagnosed far too early in her 50s. Another friend’s mother finally passed away after battling the illness in assisted care for years. My friend’s family experience showed me first-hand how the disease’s many legal and caregiving duties can divide families when family members confront the illness in an elderly parent or spouse and try to sort out these roles. It can be very messy and often painful.
A family member of mine may have it, or perhaps another form of dementia.
Alzheimer’s or dementia?
I say “may” because a diagnosis of Alzheimer’s is only 100 percent certain following an autopsy of a victim after they die, revealing amyloid plaques and neurofibrillary tangles in the brain.
Some experts in the field claim nine out of 10 cases can be spotted with proper monitoring, MRI and PET scans, and what is often described as simple process of elimination.
Family members with a loved one in the midst of the disease will speak at length talking about the uncertainty of what condition their mother, father, or spouse has—with less certainly than promised by experts. This often leads to descriptions of drug regimes that are given to those with likely diagnoses.
Other diagnoses for dementia could include vascular dementia, or memory loss caused by microscopic bleeding in the brain; Parkinson’s disease, the degeneration of nerve cells that impacts one in ten Alzheimer’s patients; or maybe even dementia with lewy bodies (DLB), which can be concurrent to Alzheimer’s and mixed dementia. Another possibility is normal pressure hydrocephalus (NPH), a nasty ailment that builds fluid in the brain and causes cognitive impairment and problems with walking.
Familiarity with these possible diagnoses is a reality with tens of millions of Americans who have family members with a form of dementia.
Enormous impact of Alzheimer’s disease
According to the Alzheimer’s Association and the Centers for Disease Control and Prevention:
- About one in eight older Americans has Alzheimer’s disease.
- It is the sixth-leading cause of death in the United States.
- A whopping 15 million Americans provide unpaid care for a person with the disease or other forms of dementia.
- Paying for care for the disease is staggering drain on the nation’s health care system, costing about $200 billion a year (2012 figure).
- In 2013, an estimated 5 million Americans 65 years or older had Alzheimer’s disease, and the number could triple by 2050.
This does not cover the personal, psychological and health impacts the illness has on family members who serve as caregivers. The 36 Hour Day, the widely read and referenced book on the caregiving for those with the disease, addresses their many roles. These are day-to-day problems, from hygiene to wandering, to the major decisions that will occur, including placing a loved one in a care home. The title says it all.
I have sat in on sessions organized by the Alzheimer’s Association for adult children of those with the illness. I give the national organization a lot of credit for this kind of support network available nationally. What I have seen are tired, challenged, stressed, and at times sad people from all walks of life. It is humbling, because I am not a primary caregiver, and I can only sympathize even more with those who are.
The comfort I have taken from these experiences is knowing that the burdens are shared, but sometimes you are left breathless at what may await you and others, and ultimately yourself when you get older.
Some caregivers suffer more
Dementia and Alzheimer’s also put adult children in a caregiving role for parents who may have been lousy parents to the children when they were younger. One study found that among more than 1,000 adults caregivers, almost one in five reported physical, verbal or sexual abuse as children, while about one in 10 reported neglect.
Such caregivers likely will have higher risks of depression because of both the duties they confront and the moral dilemmas caregiving poses to them—being good to those who were not good them. (See Eleanor Cade’s book “Taking Care of Parents Who Didn’t Take Care of You.”)
Focusing on healthy activity earlier in life: the evidence
One hopeful piece of research I found from the August 2014 edition of the health journal The Lancet, “Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data,” noted early in life and upstream interventions could make a huge impact on the disease later in life. The authors of the study noted “… a third of Alzheimer’s diseases cases worldwide might be attributable to potentially modifiable risk factors. Alzheimer’s disease incidence might be reduced through improved access to education and use of effective methods targeted at reducing the prevalence of vascular risk factors (eg, physical inactivity, smoking, midlife hypertension, midlife obesity, and diabetes) and depression.”
The American Public Health Association cited this breakthrough study and reported reducing the risk of each risk factor by 10 percent, it might be possible to reduce Alzheimer’s prevalence by 8.5 percent by 2050. That would mean the 9 million fewer cases of the disease.
I shared this research with the Washington state chapter of the Alzheimer’s Association in the summer of 2014, when the group was taking public comment on their state action plan. I wrote to them citing this study and urging the organization to consider public health approaches that did not involve over-medication of patients and were based on population methods that could even be more cost-effective. I suggested the group participate in large-scale health fair activities that promote physical activities like walking earlier in life. I doubt these ideas took root—they require coordinated advocacy by families pushing against the “drug-solves-all” model.
Families looking for solutions beyond drugs
At the public meeting I attended in Seattle that had other family members with impacted parents, about half the people in the room voiced support for alternatives to drugs like Aricept (Donepezil), which groups like Public Citizen have voiced detailed concerns over. As someone who has sat in a room with many people dealing with parents on medication, it is very alarming to hear about the volume of drugs that their parents take. It may not even be clear a drug like Aricept is the best course, simply because someone with symptoms may not have the disease.
At this chapter meeting, I also felt hope seeing and hearing how committed many families—families that include elderly doctors suffering from Alzheimer’s—were to reducing and eliminating drugs that doctors prescribed for their parents. As the Mayo Clinic notes, current drug regimes may boost the performance of some brain chemicals, but they do not address the underlying conditions leading to the death of brain cells.