I am a psychologist with 40 years of clinical experience. Although a small portion of that has been spent assessing and treating patients suffering from dementia, my primary interest in the field comes from personal experience. My father, who was also a clinical psychologist, was diagnosed with dementia 14 years before he died at the age of 86. I will never forget the first time that I knew that something was fundamentally wrong. It was Rosh Hashanah, the Jewish New Year, and my mother had asked my father to tie my young nephew’s tie before we left for services. He did a lousy job and she scolded him for it, unaware that his capacity to perform simple tasks had begun to decline. When we returned home, there was no sign of him. My best friend and I walked back to the synagogue and were unable to find him. As we were about to cross the street, my father emerged from a wooded area, still in his suit and covered with brambles. I exclaimed, “Dad, where were you? We have all been so worried!” He replied, “I was mad at your mother”, as though that explained it. In a way, it did, although he could not fully express it. We later surmised that he had felt humiliated by my mother’s admonishment which somehow became a plausible reason for another failure: his disorientation finding his way home on a route that he had walked hundreds of times.
Whenever I would tell people that my father had dementia, the response ranged from sympathy to pity. It was difficult to convey that although there were significant losses involved, there were also a plethora of experiences that involved connection and growth. My mother deserves the credit for much of this. When faced with my father’s illness, she was quick to “make lemons out of lemonade”. Since she knew him so well, she was able to tap into the remaining reserves within his brain and draw him out. His children and grandchildren, in turn, were able to follow suit.
In Part 2 of this series, I will describe the many ways in which she engaged him using imagination, humor, music, singing and his personal life experiences. However, before we dive into how to help people with dementia, let’s first understand what it is.
Dementia is caused when the brain is damaged by disease or a series of strokes. Alzheimer’s Disease is the most common form, but many other diseases result in dementia. Specific symptoms depend on the part of the brain that are damaged. It’s important to note that the speed of progression varies. Dementia is characterized by a set of symptoms that reflect impairment of cognitive functioning such as memory, executive functioning and language. Both short-term and long-term information are stored in memory. People with dementia have impairments in both, particularly in recalling recent events. Executive functioning relates to concentrating, planning or organizing, and language pertains to the ability to both initiate and follow a conversation as well as to communicate thoughts and feelings. Dementia influences a person’s visual-spatial skills, or their capacity to judge distances and see objects in three dimensions. It can also affect orientation, causing someone to lose track of a day, date or place. There are often changes in moods and behavior. A person with dementia can be irritated, anxious, agitated, withdrawn and/or depressed.
My father retained a few pockets of long term memory, but his short-term recall was pretty much wiped out. If asked what he had for breakfast, immediately upon finishing it, he would have no idea. Once a brilliant communicator of both the written and spoken word, he lost his ability to read, write or initiate a conversation. When asked simple questions, he could often respond, although his answers were not always accurate. He usually recognized us, but had difficulty recalling our names. When I would ask him who I was, he would typically say, “my mother”. When told that was incorrect, he would say “my wife”, followed by “my girlfriend”. Then I would give him a hint, saying “Li….”. Sometimes, he would respond right away with “Lisa”, but other times, it would be “Lee Harvey Oswald”.
Understanding Dementia through the Medical Model
We currently have no cure for dementia. Traditionally, medical professionals have focused on etiology (what causes dementia), prevalence (the total number of cases within a given population), the progression of symptoms and different treatments. Anti- dementia drugs can slow down the disease in earlier stages, and antipsychotic drugs have been used to help reduce depression, agitation, and/or aggression in dementia patients, although they may have harmful side-effects. In addition to medical treatment, however, it is important to focus on ways of engaging with dementia patients and helping them and their families to adapt and sustain meaningful lives.
Salutogenic Model and Patient Engagement
The Salutogenic Model is one such way of engaging dementia patients. The focus is on how people comprehend, manage and make meaning of their lives even when faced with serious health issues. This model promotes well-being for the patient and family members by helping them adjust to changes in functioning while still finding ways to preserve identity, connectedness, meaning, growth and joy. The patient and his or her family are encouraged to identify and respond to emotional needs in a positive way.
In my next blog post I will cover the myriad of ways to engage people with dementia and will include a link to a film that shows how my mother utilized these techniques with my father.