There are a lot of uncertainties after a diagnosis of dementia—for the individual living with the disease and for their family. Yet experts advise staying engaged with life during the early stages of dementia and then keeping someone with dementia engaged as the disease progresses.
As a person’s ability to recognize their loved ones recedes when dementia progresses, it can be challenging to stay engaged. Despite the illness there is a still a better quality of life to experience when a person can engage their mind and body with social, physical, and creative activities.
“Engaging older persons with dementia inappropriate activities has been shown to yield beneficial effects such as increasing positive emotions, improving activities of daily living (ADL) and improving the quality of life,” state the authors of a paper title, “Engagement in persons with dementia: the concept and its measurement” that was published in the American Journal of Geriatric Psychiatry. “The study of engagement is a necessary foundation for the development of nonpharmacological interventions for persons with dementia, whether the interventions address depression, agitation, apathy, loneliness, or boredom.”
Drop the Stigma ASAP
Societal stigmas about dementia may be interfering with the possibilities for engagement.
“A 2012 public opinion survey conducted by the Marist Institute of more than 1,200 Americans placed dementia as the most feared health condition above cancer, stroke, heart disease and diabetes,” explains Karen Love, founder of the Dementia Action Alliance. “This is likely because dementia is a condition saddled with societal stigmas and one that is widely misunderstood. The misperceptions and societal stigmas are of dementia being all doom and gloom and lost abilities rather than a positive orientation to support and engage existing strengths and abilities. Positive engagement is central to psychosocial well-being.”
Ms. Love shares examples of people living with dementia who are finding ways to remain engaged in their lives despite their diagnosis. One of these examples if that of a retired pharmacist living with young-onset dementia who devised a simple, ingenious plan he calls ASAP to help support his well-being. “ASAP stands for Acceptance, Socialization, Attitude, and Purpose,” Ms. Love said. “This means accepting he has a degenerative neurocognitive disorder, staying active socially because it is important to him, keeping a positive attitude about life, and continuing activities that provide him purpose and interesting things to do.”
As a family caregiver or friend to someone living with dementia, you may not know how to continue to engage with them, despite your best intentions. Ms. Love notes that there are countless ways to positively engage someone who is living with dementia, and offers a few tips:
Ms. Love is the Managing Director of FIT Kits®, engagement products for people living with dementia. They are evidence-based and research-tested under a grant from the National Institute on Aging. Each kit includes different activities—puzzles, games, fitness, and more.
“The research found that 90% of care partners reported that the individual living with dementia enjoyed FIT Kit® activities a lot, and the same percentage of care partners reported that they enjoyed the engagement as well,” she says. “FIT Kit items were able to address the challenge of finding interesting and meaningful things to do and increased the quality of interaction between the individual and care partners.”
Ultimately, it matters how we treat each person.
“Our understanding and expectations about what an individual can or cannot do affects how we treat them, and how they are treated subsequently impacts upon their overall well-being,” says Ms. Love.
The global spread of the novel coronavirus (COVID-19) has led to a lot of questions about alternatives to nursing homes with everyone now being asked to “social distance” and what it means to be safe, or safely cared for, during a pandemic.
Lisa Shultz was suddenly told that she could not visit her mother weekly because of new rules to help limit the spread of the novel coronavirus. Learn how she is coping and still connecting with her mom.
Elder care in a time of recommended isolation can be tricky for family and friends. See what's recommended to stay connected safely.