EDITOR’S NOTE: This column was submitted by Wayland High School graduate Mike Permoda. He recently retired from a career of bedside nursing in hospital and longterm care settings. He now is a part-time clinical instructor and tutor. He owns a bachelor of science degree in nursing.
Long term care needs of an aging population where 80% of us will live with chronic ilness, oftentimes requiring caregiving help, should cause concern given the fact that the ratio of caregivers to those in need wil get worse in the coming generations.
What America’s fragmented health care system doesn’t do well, and we are not alone, is provide quality affordable care for a vulnerable and fragile elderly population, dementia care being one of the most challenging.
These are a few takeaways from an informative little book, “Elder Care in Crisis,” (Ablc, NYU Press, 2022.) The author poses the question of whether care for this population should be part of the social infrastructure, and be given more attention by the government.
It’s suggested that the government, evidenced by a seeming reluctance to designate public resources and money toward this growing problem, prefers that families carry the primary responsibility of elder care, and only when that source is exhausted — physically, emotionally, and often times financially, should a social safety net come to the rescue. This, of course, happens only after not a small amount of paperwork.
Indeed, families are encouraged early to apply for Medicaid, the federally funded program managed by the states to provide health care to low income adults and children, as applications are processed at a snail’s pace, or so it seems when we are faced with crises. This process normally requires the help of adjunct paths: national and local non-profit organizations, support agencies, and elder care lawyers (Area Agency on Aging, Alzheimer’s Association, Family Caregiver Alliance. state long term care ombudsman, hospice care, etc.)
The relief of finding a long term care home should not necessarily be seen as a panacea, as the vast majority of them are for-profit, which, for some, is synonymous with insufficient staffing levels. Furthermore, it should be remembered that assisted living facilities are not regulated, a fact due, in part, to understaffed regulatory agencies (“Life and Death in Assisted Living, PBS-Frontline, 7/30/2013).
It’s reassuring that in the spring of this year the Centers for Medicare & Medicaid Services (CMS) have updated nursing home rules requiring more direct RN/CNA
(Certified Nursing Assistant) care to residents and that facilities have an RN on duty 24/7. Nursing home lobbying groups cal this an “unfunded mandate” CMS is not increasing reimbursements – and wants Congress to overturn the rules. (“All Things Considered,” NPR, 4/24/24).
The often times harsh reality of what’s in story for families of those who sufter with dementia, a disease with two victims, makes it difficult not to realize that these demands find little support. Not only is adult care a poorly paid job, a fact the author attributes to the government’s and medical world’s prioritizing, “fetishizing,” acute care and undervaluing chronic care.
Demographics predicted as the Baby Boomers age demonstrate that the pool of caregivers will most assuredly shrink. This prediction is less based on a reduced number of caregivers and more on the reality of an increasing aged population. If it is difficult to find caregivers among the current population, one can only imagine what the future could look like. But like climate change, there is hope.
German pathologist Alois Alzheimers in 1906 found on autopsy protein tangled in the brains of patients with what we then called senility (Renault, M,. A” French Villages’ Radical Vision of a Good Life with Alzheimer’s,” NewYorker.com, 11/23/22). This discovery gave a name to what was hitherto considered part of the normal aging process. And while it is true that dementia generally presents in later life, healthy people in their 50s can develop
Dementia is defined as a”chronic confusional state.progressive loss of brain function and impaired cognition” (Gnatavicius, Workman, Rebar, Heimgartner, “Medical-Surgical Nursing” 10th ed., Elsevier, 2021). Alzheimer’s caused by brain plaques and tangled proteins, and vascular dementia – by multiple TIAs, “mini-strokes,” make up the majority of dementias.
Also included are Lewy-body and frontotemporal (Aldwin, Igarashi, Gilmer, and Levensen, “Health, IIlness, and Optimal Aging”, 3rd ed,. Springer, 2018.) Vitamin B1 deficiencies, normaly result from poor dietary intake in alcohol abuse, can cause Wernicke’s/Korsakoff dementia.
Though money spent on the dominant medical model, via brain research and medications, is considered, de facto, well spent, more person-centered research has shown promising results. Personhood is described as a “standing or status that’s bestowed upon one human being by others, the context of relationship and social being.” It helps to restore a sense of identity, promotes social interaction, and tries to understand who the person was to help with understanding who they are now.
While not necessarily contrasting with the medical model, which tells caregivers what to expect from predetermined stages of the disease, this view promotes the importance of restoring dignity by accepting the person’s reality, values, beliefs and interests; and highlights the importance of touch (Abel, 2022 pg 6, 28, 147).
A real worry for caregivers is when loved ones experience delirium, a sudden change in cognition, either more lethargic or more agitated, an acute confusion. (Ignatavicius, et al). Delirium and pseudo dementias in a non-demented person is usually a result of an infection (normaly bladder), medication effects, surgery/anesthesia, alcohol intake/inadequate nutrition and presents acutely with cognitive impairment. These conditions are usualy reversible by treating underlying causes (Aldwin, et al).
The dilemma facing caregivers when a loved one with Alzheimer’s has a sudden change in behavior is deciding if the change is due to worsening dementia or a treatable condition. Acute care facilities (hospital ERs) can trigger a delirium and it is advised that caregivers never leave their Alzheimer’s family member alone nin new surroundings, a fact that the pandemic made abundantly clear. (Abel, pg 151).
Getting to the heart of caring for patients living with, and dying from, dementia, the author relies on internet (social media) chat forums which she admits early on come from a wealthier white demographic with more available resources. The value of the posts comes from the fact that dementia does not discriminate, and the struggles that poor minorities face would coincide with their wealthier counterparts, albeit with far fewer resources. Interestingly, Black families did not recognize the “caregiver” label, suggesting that it is just what people do. “it’s family” (Abel, pg 24).
Caregiving families express remorse when faced with the prospect of having to place their loved ones in facility, i.e., remove them from their home. The pages are full of anecdotal stories of what people go through in the process of this care, whether it be at home, in a memory unit, a nursing home, day (or night) care. While there were some of what might be considered positive outcome stories, there were, likewise, enough to support the title of the book – “crisis.”
For instance, it should be remembered that, as confused as someone is, removing them from familiar to new surroundings has the real capacity to set of real crisis inside the mind of an Alzheimer’s patient. It was noted that often times after a resident eventually got comfortable in these new surroundings, the anxiety would repeat if removed from it.
People without dementia who suffer from any other system failure and find themselves on the chronic illness spectrum have one thing in common, the thinking organ normally remains intact. Notwithstanding brain strokes (cerebrovascular accidents – CVAs) which affect sensory-motor function, normally leaving higher brain function mostly intact, the uniqueness of this malady with its tangled proteins robbing us of our higher brain processes, makes this a most cruel disease. As much as we like to recognize similarities in disease processes so that we can manage and improve care, the challenge here is that the presentation is not always uniform, and care of these residents centers mostly on harm reduction and maintaining quality of life, dignity.
Responses like “They can’t love him like I do,” or “She’ll die in there,” that clearly come from a place of guilt or remorse, and are not without some truth, are not always fair. (Not only do families grieve the loss of the person they once knew, they worry and fear what the immediate and long term future will look like.) It is not a condemnation of our long term care facilities to say that they can do better. For reasons not entirely under their control, care in these facilities have room for improvement. That said, it is not always bad. There were many stories that refer to the reality that life was better for loved ones where they could be more watched. And it should be remembered, these families were at their wits end in their inability to provide care to their loved ones.
Our focus on the medical model alone may not be sufficient. Dementia researchers are finding positive results not necessarily inaccurate but in beter outcomes with this progressive approach. And it should be remembered that slowing the deterioration and minimizing complications isa worthy goal, given that this disease is terminal.
Franceis spending 6 milion Euros a year to care for 108 dementia patients in a community that shows promise. The Vilage Landais in the southwest part of the county is a Dementia care community that seeks to rehumanize the dehumanizing aspects of Alzheimers’. The Vilage has 61 group homes, grocery store, restaurant, barber shop, etc,. and employs 120 workers with an additional 60 volunteers.
While the medical community and even the Alzheimer’s Association seek to live in a world without dementia, this approach counters with the, more realistic, view of living in a world with it. Hogeweyk, a similar village in the Netherlands, opened in 2009, and though not affiliated with Landais, was a blueprint for its design. (Renault).
While we search for this elusive cure, one can hope that these alternative approaches demonstrate a real improvement in care for sufferers of this cruel disease. Dementia patients living in nursing homes that were denied contact with loved ones during the pandemic did noticeably worse, seemingly deteriorating acutely from lack of touch or connection. This is not a criticism of nursing home staff; rather, it speaks ot the adjunct benefit of family or friend’s interaction. Indeed, it can be seen as essential as caregiving ot this population has exponential demands, and may reinforce the value of a person-centered focus.
One takeaway from the book is that, because the government doesn’t prioritize long-term care needs, private enterprise would see the opportunity and fill in. To an extent that has happened with a preponderance of for-profit facilities, and for better or worse, the growing presence of private equity firms. It can be argued that, though many of these facilities depend on the private pay of wealthier clientele, depending on which type of care is delivered, they are also relying on government dollars.
That by itself is not a problem. It does become a problem when there is little oversight, or worse, can’t keep up with the demand. Fragmented health care means fragmented problems and elusive solutions. A step in the right direction would be to first recognize that we have a problem, and understand that is only going to get worse. Many might be fine with that, until, of course, it hits home and we ask the proverbial question, how did it ever get this way?
