How does one define “quality of life?” Three little words with different meanings, contexts and perceptions. There are many theories and assessment tools to define and measure quality of life; Engaged theory, Assessment of Quality of Life Instrument, Adult Trait Hope Scale, Ethical Markets Quality of Life Indicators and countless more.
Scientists, psychologists, sociologists, researchers, multitudes of professionals and people in all stages of life clamor to define these three words and vie for their interpretation to be accepted as the definition of quality of life. People’s interpretations vary within cultures, families, and even within oneself. It’s no wonder there is so much ambiguity related to this topic.
I understand the uncertainty. For folks with progressive diseases or symptoms that have no cure, the future can seem bleak to some, not necessarily to the person with the illness. Further complicating factors include when the person with the illness displays negative emotions, is no longer able to make decisions or has made comments in their healthy days about not wanting to live in this state.
“Negative” may be weepiness or agitation. We all have times when we need a good cry or a flare up of our temper. There is a sense of autonomy in the ability to express a vast array of emotions. Even these negative emotions demonstrate a spark!
From my perspective as a Memory Care Director, quality of life is measured in moments. People with later stage Dementia typically don’t have the ability to plan or remember. In a 24-hour time period one person may display joy, sadness, anger, apathy or complacency. Generally, there is something to make you laugh, cry or get angry. It’s normal to have feelings. Unfortunately loved ones sometimes dwell on the negative moments and miss out on the joys of being truly present with their mother, father, spouse or friend with Dementia.
I’ve often heard a loved one of the person with Dementia say, “They would never want to live like this” or “This is not living.” I know Dementia is challenging, but I urge people to experience the moments, feel the feelings with your loved one and when the negative moments are tough, wait for them to pass and help the person move on to enjoyable moments.
Long into the progression of their illness, I have seen families heal, parents control less and love more, and people behave more freely rather than with restraint. I have had the privilege of seeing a mother hold her child in her last days in the loving, nurturing manner the child, now a retired adult, longed for her entire life. I have witnessed a volatile and selfish father turn into a loving and doting dad who reveres, admires and cherishes his daughter.
I have numerous examples of persons with Dementia enjoying meaningful experiences and families connecting in a deeper way in the midst of progressive Dementia. In my opinion, this translates to a positive quality of life. I hope that you are inspired to find and create meaningful moments with your loved one, and perhaps to redefine your perceptions quality of life!
– Joanne Rodda-Hubbard, Director of Memory Care