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:
- The most important step is to know what the individual finds enjoyable and interesting.
- Not all engagement is active. For example, some people like to spend time outside feeling the sun and hearing birds or wind blowing.
- Sitting on the front porch and watching the neighborhood activity can be interesting as well. Going for a walk is fun and good exercise.
- Looking at magazines and picture books together is interesting and provides ways to stimulate conversation.
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.