The lived experience of people with dementia
The most common degenerative brain disease causing dementia was identified by Dr Alzheimer in 1906. The Alzheimer Society of Canada was not founded until 1978. The society initially focused on educating the public that dementia was not a normal part of aging. The first support group for people with dementia was not formed until 1993, and it was 2003 before a person with dementia sat on the society’s Board of Directors.
Books about dementia initially focused on the disease, the caregiver’s journey, and perspectives about the patient’s journey. Only in the past few years have memoirs been written by people with dementia. This pattern is a symptom of the stigma supporting the idea that a person with dementia dies inside a living body.
Medicine has done little to reduce this stigma; written material focuses on losses from the disease seen from a professional perspective. It is time for medical professionals, and society in general, to learn from qualitative studies about the experience of people actually living with dementia.
A meta-synthesis (from 2018) of the lived experience was derived from 626 individuals in 34 studies from various countries. The introduction is particularly meaningful:
“The way certain conditions and phenomena are understood and conceptualized, shape professional approaches to treatment and sociocultural perceptions of those experiencing them. This in turn has implications in terms of the experience of individuals living with a condition.”
The study found three major themes. First, people with dementia live with constant change due to the loss of cognitive capacity and altered perceptions of the physical environment. Second, they strive for continuity by using a variety of coping skills. Those who adapt well have their identity invested in more than cognitive skills, and demonstrate resilience. The third theme is the double-edged impact of the environment, which consists of interpersonal relationships and the physical environment. A positive environment allows people with dementia to continue participating in life, and includes caregivers who facilitate retaining control and a sense of agency—key to a person’s experience of dementia.
This echoes Kitwood’s research into maintaining personhood in dementia. He concluded that personhood is “a standing or status that is bestowed upon one human being, by others, it implies recognition, respect and trust.” Kitwood describes the following ways in which people act that undermine a person with dementia’s personhood: ignoring (conversing with others as if the person is not present), infantilizing, disempowering (no unsupervised walking), objectification during personal care, withholding, and imposing. Through recognition, collaboration, negotiation, facilitation, validation, celebration, as well as adapted physical environments (dementia villages) we can enable people with dementia to continue to live meaningful lives.
In a systematic review of 27 studies on positive experiences with dementia, the authors found three themes across the experiences. First, they focused on aging well (as opposed to focusing on their dementia) by seeking pleasure and enjoyment and continuing to do what was important to them with the support of their loved ones. Second, they faced their challenges with hope and humor as opposed to focusing on loss. Third, they gave thanks through life review and cited personal growth from the illness, including preserving their identity.
Education and training in dementia care must emphasize the obligation we have to maintain not just the basic biological and physical needs of people with dementia, but also the higher needs—social activity, sense of belonging, self-esteem, and meaning in life. Maslow’s hierarchy of needs has been adapted for dementia and serves as a reminder that care must focus on more than basic needs.
While I am not trying to romanticize dementia, these studies indicate that how dementia is managed has a significant impact on how people with dementia perceive themselves and their life. As physicians, the care we provide must recognize personhood. As citizens, we should advocate for community services and facilities that allow people to continue to lead meaningful lives. While there currently is no cure for dementia, we can positively influence the lives of people living with the disease.
—Romayne Gallagher, MD, CCFP(PC), FCFP
This article is the opinion of the Geriatrics and Palliative Care Committee, a subcommittee of Doctors of BC’s Council on Health Promotion, and is not necessarily the opinion of Doctors of BC. This article has not been peer reviewed by the BCMJ Editorial Board.
1. Gorska S, Forsyth K, Maciver D. Living with dementia: A meta-synthesis of qualitative research on the lived experience. Gerontologist 2018;58:e180-e196.
2. Mitchell G, Agnelli J. Person-centred care for people with dementia: Kitwood reconsidered. Nurs Stand 2015;30:46-50.
3. Wolverson EL, Clarke C, Moniz-Cook ED. Living positively with dementia: A systematic review and synthesis of the qualitative literature. Aging Ment Health 2016;20:676-699.
4. Scholzel-Dorenbos CJ, Meeuwsen EJ, Olde Rikkert MG. Integrating unmet needs into dementia health-related quality of life research and care: Introduction of the hierarchy model of needs in dementia. Aging Ment Health 2010;14:113-119.
Romayne Gallagher, MD, CCFP(PC), FCFP. The lived experience of people with dementia. BCMJ, Vol. 61, No. 1, January, February, 2019, Page(s) 39-40 - Council on Health Promotion.
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Regarding Alzheimers / Dementia, having been there for my husband who lived with Alzheimers then passed away in 2013, I found it totally unacceptable the few hours of free time I was offered through a health care worker by Interior Health. It is not reasonable by any stretch of the imagination to expect the principle caregiver to have no life of their own for the duration of their loved one's illness. Such can cause stress related illness to the caregiver and impatience with the patient. I handled it but I know of people who could not. How many sick people do you really want to deal with? Please, protect the caregiver so health care doesn't end up paying for illness they get from all the stress. Let them love and care for the patient but have free time to care for themselves too. Also, when I went through this with Community Care several years ago I was very much pressured, even after I told them 3 doctors had told me it was too much for me to keep him at home and it wasn't until they reduced me to tears (and I rarely ever am reduced to tears) that they suddenly changed their strategy and said they'd try to find a care home for him. That really added to the stress of it all. On behalf of present and future caregivers, please give consideration to my comments. Not everyone finds the opportunity to express this but having been there I know how they'll be feeling.