There is an advertisement picturing a middle-aged couple walking down the beach. As they walk, the woman’s image slowly dissolves, leaving just one beach walker. Families of people with dementia experience this feeling of dissolution and loss. In the early stage of dementia, the afflicted patients themselves can often feel loss and sorrow as their own organizational principle weakens; their ego (as described by Rudolf Steiner) loosens, leaving them to battle with confusion and disinhibited impulses. Dementia may present as personality changes, delusions, or agitation, as well as declining memory and cognition. The disease will relentlessly progress to increasing dependence for all daily activities, and to shortened life expectancy. There are no cures and few palliative treatments, but there may be some preventive strategies. Experienced providers can assist in charting the tricky future course, guide the burdened families to resources, and provide suggestions for financial and practical planning. And gifted therapists can coax organization and enrichment for these prematurely fragmented human beings.
Alzheimers disease (AD) accounts for 60 to 70 per cent of dementia diagnoses. AD has an estimated ten-year life expectancy from the time of diagnosis. Memory and competence with everyday tasks (such as housework, laundry, and food preparation) usually deteriorate first. This phase is followed by loss of language and ability to perform personal tasks such as dressing, bathing, toileting. Most patients will also have behavioral disturbances such as wandering, outbursts of anger and anxiety, and delusions. A third phase is characterized by muteness, failure to understand eating and swallowing, incontinence, loss of the ability to walk, and eventually a bedridden state. Vascular dementia has a course similar to AD, but occurs in patients with preexisting high blood pressure, and first affects executive function, which is the ability to gather information into patterns. For example, those with early vascular dementia will be able to name the time, date, and current events, but can’t quickly name types of animals, or draw and interpret the face of a clock. Lewy body disease is associated with Parkinson’s disease, and is characterized by early vast fluctuation of memory and personality, early delusions and hallucinations, and eventual Parkinson-type qualities including stiffness, and often dramatic drops in blood pressure (hypotension) when standing. Hypotension results in repeated falls and injuries, leading to early wheelchair-bound status. Patients with frontotemporal dementia may show compulsive and stereotyped behavior and pronounced personality changes.
There is much overlap in the characteristic symptoms for all the types of dementia. Regardless of the initial symptoms, most types of dementia are accompanied by the progressive memory and functional changes seen in AD. Except for a few rare infections or nutritional deficiencies, dementia diagnoses are based on the person’s history and verbal tests. There are no blood or spinal fluid tests to confirm a certain diagnosis. Computerized tomography (CT) scans and other image tests of the brain may aid the diagnosis, but only if the person shows signs of dementia. At autopsy, the brains of elderly people with normal memory and behavior have been found to contain abnormal and non-functional proteins identical with those of AD patients. However, the abnormal proteins are less concentrated in the memory and association-rich areas of the brains of normal people. As pointed out by van Gerven, the locations of these abnormal proteins in the brain tissue seems to be more important for memory and function than the nature of the abnormal proteins themselves.
Brain imaging of patients with vascular dementia typically show small strokes or poor blood supply deep in the brain, at the natural terminal (the so-called watershed area) of the blood vessel. Here the vessels are very tiny, the blood flow is slowed, and they are more vulnerable to damage from high blood pressure. Again, damage to the brain typical of vascular dementia has been found in one-third of brains of elderly people who had no evidence of memory disturbance during life. Both Alzheimer’s and vascular types of dementia occur more frequently with increasing age. Do they represent accelerated brain aging? It is daunting to think that dementia becomes more likely the older we become. On the other hand, it would be encouraging to find and use tools that slow brain aging.
In addition to memory loss and increased need for assistance, behavioral changes are common to all types of dementia. Behavioral changes are the greatest source of consternation for families and caregivers. In our ordinary understanding, behavior has a conscious will component, an opportunity for the individual to choose a more rational or acceptable option of expression. We assume that the normally developing ten-year-old might steal some money out of his father’s wallet not because he can’t do better, but that he won’t. Is the man with dementia showing obstinence, obstruction with caregivers, and flares of anger because he won’t choose better behavior, or because he can’t? Is the woman with dementia wandering, obtrusively searching through her neighbor’s belongings, because she won’t do otherwise? Sometimes these behavioral changes are an extreme form of an already existing weakness; the elderly man who now shouts aggressively at others actually had the tendency to do this in the past. It seems obvious that the dementia patient is not responsible in the usual sense of the word for these outbursts. Nevertheless. families struggling with difficult behavior need frequent reminders and strategies. The human ego (or “I”) as described by Rudolf Steiner is a force or dynamic, not a material body. But the ego needs an intact brain to carry out the dynamic of elevating and directing human behavior to higher standards than those of impulse and instinct. In dementia, this ego force is loosened from the human being, permitting unbridled wishes, impulses, and fears to be expressed. Physicians can explain the progression of illness, the parts of the brain affected, and suggest strategies for families to use in diverting these outbursts and repeated behaviors.
An example might be obstructive behavior with attempts to deliver care, such as flinging a shoe or shaking a fist at the caregiver who is trying to bathe the person. It may be helpful to view the behavior as a fear of being touched and hurt, or irrational fear of drowning in water while being bathed. A gentle bath of the feet only, accompanied by a story, may pave the way for a future washing. If aggressiveness persists, the bath must be considered optional at that moment and tried at a more opportune time; possibly a warm sponge bath given in bed before going to sleep. Redirection is also powerful. The lady who is rifling through her daughter’s or neighbor’s drawers might respond to the question, “what are you looking for?” She could be accompanied to her own room, or to another location where a similar article might be found. If not found, the hunt can be diverted to absorption in something else, such as a puzzle; looking at, smelling, and caring for some flowers; or a snack. General advice to families is “try not to say ‘no!’ Find a way to change the focus instead.”
Therapists can often lure a fragment of the ego into its rightful place during therapy sessions. In the excellent book Dementia and I, Christa van Telligen MD and Marco van Gerven MD have gathered thoughtful essays on the nature of dementias and patient care. Art therapist Jacqueline Stoop described work with patients in early-stage dementia. She begins a session by pointing out and describing hands; their size, shape, age, texture, portrayed in multiple paintings hanging on the walls of her therapy room. A story about counting your blessings on your fingers follows; but this also could be a short poem, song, or object. The group is asked to recall and tell hand memories of their own, then draw and share hand portraits. Finally, the participants wash their hands and the art therapist carefully applies rose cream to each pair of hands. In listening and telling aspects of their hand biographies, drawing them and then sharing their drawings, the ego forces of the participants have briefly connected and “fleshed out” the participants in their full humanity. Using a different therapeutic modality, the Dutch music therapist Connie Alblas notes that music creates inner movement. Musical memory is long! In my experience, a former pharmacist and choir member now with advanced dementia, dependency, and few remaining words, would occasionally break into the tenor harmony of a church hymn when others were singing the melody. Ms. Alblas leads a choir composed of people at various stages of dementia. She notes that “people cheer up by singing, and they radiate because they can form words and communicate. Singing is a powerful impulse for social life…Outside choir time, the differences (in levels of dementia) become visible. During choir they almost disappear.” Once again the ego, the “I” finds a foothold to briefly assume its role in full humanity. These occurrences remind us that fourfold human being is still present despite the illness. In his comments about dementia, Dr. Matthias Girke refers to dementia patients as spiritually present but “veiled.” Those spiritual forces can briefly be called together, sometimes surprising us by their full appearance.
Many dementia experts are seeking ways to help prevent or delay the onset of dementia. Most of these suggestions involved long-term lifestyle changes, such as regular exercise, treatment of high blood pressure, avoiding smoking and excess alcohol. A plant-based diet decreases the production of free radicals, which can harm brain cells. Nerve tissue has low vitality and poor ability to regenerate, so it is especially important to guard it from injury. People with higher levels of education, with a rich and active thought life have what Dr. van Gerven names “reserve.” If they do develop dementia, many more brain associations have been formed through life, so that normal function can be maintained longer. Van Gerven also discusses the injurious nature of chronic stress. Consistently high stress levels generated from undigested childhood or adult trauma contribute to higher levels of stress hormones. Increase in the stress hormone cortisol results in ongoing inflammation, poor immune function, and is a risk factor for dementia. Meditation, devotion, and a spiritual path can lead to some freeing from the unconscious, intense physiologic stress, through better acceptance and integration of the past.
Girke, Matthias, Internal Medicine; Foundations and Therapeutic Concepts of Anthroposphic Medicine (Berlin: Salumed-Verlag, 2015). www.ivaa.info to order in English.
van Geven Marko, van Tellingen Christina (eds), Dementia and I, and Bolk’s Companions on the Practice of Medicine. Kolisko Publisher, 2015.