More Young People Impacted by Alzheimer’s Than Those Who Live With It Part II | Karen Lankford, PhD, and Dierich M. Kaiser, MD

Alzheimer’s Disease is one of the great terrors of old age, especially for those who have witnessed its effect on a loved one or dear friend. It is understandable that people would delay talking to their doctor about memory problems. This diagnosis is frightening to face. But delaying a medical evaluation is a mistake.

There are many potential causes for declining memory. And, many of those causes are quite easily treatable. For example, the ability of the liver to break down medicines tends to decline with age. So, medication dosages that successfully treated chronic health conditions at age 50 might result in circulating levels of chemicals which are much too high at age 60 or 70. Dosages may need to be reduced to prevent neurotoxicity. Paradoxically, some medications that are converted into their active form in the liver might need to be increased every few years. The ability of the digestive track to absorb key vitamins can also often subside with age. So, certain supplements may become needed to maintain brain health.

Kidney disease can alter blood chemistry and cause mental confusion. Cardiovascular disease can lead to vascular dementia which can be addressed by treating the underlying heart and blood vessel problems. More recently, long COVID-19 syndrome has been associated with persistent brain fog and memory problems. For some of these patients, persistent inflammatory responses to viral fragments appear to be the cause of the memory problems. And, vaccination or vaccine booster shots can help the body clear these fragments and restore normal functioning. In short, all other possible causes of memory decline and/or personality changes should be investigated, and ruled out, before concluding that Alzheimer’s Disease is the cause. Many of these other causes are treatable.

If Alzheimer’s Disease is the diagnosis, proper medical treatment can still improve quality of life. That is
because many of the more problematic symptoms are manageable with proper treatment.  Medical treatment of people with Alzheimer’s should begin with a careful assessment of the person, their symptoms, and their life-situation.

The practitioner has to approach the conversation with patience, humility and a knowledge of how to navigate the complex twists and turns of this illness’s symptoms and course. Unfortunately, many primary care physicians are not good at this. They are not used to considering the psychosocial ramifications of an illness or dealing with conditions which they cannot cure. To my dismay as a psychiatrist, I have too often seen patients with primary care practitioners who are not really up to the task – and unwilling to try existing treatments that may require some trial and error to manage symptoms. I expect that some practitioners brush off the problem and assume that it will be dealt with by a neurologist or psychiatrist (whom their patient may never have an appointment with) or see treatment as pointlessness, knowing that no “cure” is possible. Consequently, Alzheimer’s patients have been a tragically underserved population – even though they are among the most in need of care. Willing, insightful and creative clinicians are needed to serve this population.

Alzheimer’s patients commonly exhibit at least some symptoms that lend themselves to pharmaceutical
intervention. Finding the best medication and optimal dosage for elderly patients with complex health conditions can be challenging. But, Alzheimer’s Disease symptoms like insomnia, depression, and even hallucinations and delusions can be effectively treated with existing medications in the psychiatrist’s or neurologist’s toolkit. Memory loss, as a core symptom of Alzheimer’s Disease, is unfortunately much more challenging to reduce – and usually impossible to rectify. Current medications only slow the progression of that memory loss. By affecting neurotransmitters like acetylcholine and glutamate, existing medications do help, but only for a short period of time. The disease ultimately progresses and erodes not only memory but also judgement, planning, personality, and pleasure -all before finally taking life sustaining abilities like chewing, swallowing, and breathing.

We can only hope that research in this field will catch up to the growing need for a more effective Alzheimer’s treatment and a cure.

Beyond medications, a therapeutic environment can help exercise the whole brain and help it find workarounds to compensate for neuronal loss. Rehabilitative activities such as psychotherapy, painting, music, dance, nature walks and yoga can stimulate neural pathways that were previously assumed to be lost. More generally, an Alzheimer’s patient needs a group of caregivers who can accept, guide, comfort, calm, reassure, and protect them through this challenging journey. Sometimes the best care lies in someone just being present – even if nothing much is being said.

The books entitled “The Caregiver’s Guide to Dementia” by Gail Weatherill, RN, CAEd and also “Alzheimer’s Through the Stages: A Caregiver’s Guide” by Mary Moller, MSW, CAS are both good starting points for pertinent reading. There are many such books because the need for this advice is so unfortunately large.

Alzheimer’s Dementia remains neurodegenerative by definition with waxing and waning symptoms day-to-day and even morning-to-evening. This difficult pathway becomes the burden of the patient, family and friends. Everyone involved unfortunately suffers to some significant extent. Just as with a terminal cancer, a grinding grief, remorse and sense of helplessness become familiar parts of the day-to-day of caring for a person with this and other dementias. The pain attached to this process can feel unbearably intense. Many caregivers succumb to feelings of outright anger at the patient, at themselves or at the overall confounding situation. Such anger is one of many emotions that come with the exceedingly complicated task of providing care. The risk of depression in a caregiver is much higher than for the average person. The lifespan of such a caregiver is significantly shorter than that of the average person.

Support for the caregiver becomes essential over time. No single caregiver should be a lone provider. Support groups through NAMI or regional Areas on Aging are invaluable resources. Families need assistance, sometimes through family therapy, to mobilize and organize around the person with dementia. The strength of a religious / faith-based support group can be invaluable. Family dynamics enter into this as established caregivers in a family become subconsciously assigned to doing most of the care for the Alzheimer’s patient. Such patterns have to be recognized and addressed so that the family adapts appropriately to this new situation. Taking turns in providing care becomes a necessity. Compassion, understanding and patience must be cultivated within the family, or friend-group, that performs this task. So often, hospice arrangements become needed not only as the end nears but also to provide emotional breaks for the whole support group. In short, the pain attached to this process can feel unbearably intense. At best, the agonizing process of mourning this gradual loss can ultimately become a crafted celebration of the life lived and the love given.

Most importantly however, patients with Alzheimer’s Diseases, and their loved ones, need our understanding and not our judgment. Patients with Alzheimer’s Disease may not be able to follow the rules of society or remember and understand what they did wrong. Family members, or paid care givers, may be dealing with episodic problem behaviors which others do not see. Doctors try to thread the pharmaceutical needle to keep their patients calm, without putting them in a stupor. Family members try to decide what is best for their loved ones when there is often no good option – especially when there are financial constraints on what kind of care they can afford. People often refer to those caring for a spouse or parent with dementia as heroic, but not everyone is cut out to be that kind of hero. Like they say in the military: If this kind of courage was easy, they would not give out medals for it.

This blog was co-authored by Karen Lankford, PhD, Neuroscientist at Yale University and Science Advisor of the American Mental Wellness Association and Dierich M. Kaiser, MD, Board Member of the AMWA, Senior Psychiatrist at Western Tidewater Community Services Board, and Locums Faculty at Virginia Commonwealth University.