The New Normal of DementiaBy GHI Communications Staff
The GHBC Sensory Room combines gentle light, movement, music and tactile objects to help residents with dementia safely explore and stimulate all five senses. The room, funded by a Quality of Life grant from the Goodwin House Foundation, can be used for calming or stimulating, depending on the needs of the resident.
Baby boomers have always been the generation of change. From protesting war to pushing for equal rights, Boomers have led the charge of challenging social norms and popular perceptions. With 10,000 Americans turning 65 everyday (according to the U.S. Census Bureau), Boomers now are redefining the way we experience aging.
The following statement is true: “The good news is we’re living longer. The bad news is we’re living longer.” Longevity comes with consequences, such as an increase in many chronic health conditions; however, we can continue to lead active, fulfilling lives. This aging reality facing our society has been dubbed by some as “the New Normal.” Embracing this New Normal by tackling aging issues with a new resolve and a resilient mindset is what sets the Boomer generation apart.
In a recent Psychology Today article, Dr. Morton Shaevitz, explained the New Normal this way: “How one copes with these health concerns is partially dependent upon attitude and action. It means making good choices with regard to food, physical activity, and maintaining relationships. It doesn’t mean that you can ultimately be cured or fully restored. The definition of chronic is exactly that – something that tends to stick around. However, it’s one’s response that is most important. The New Normal is that many of us will be dealing with an increasing number of medical problems, but will be living full and active lives.”
As the number of Americans aged 65 and over has skyrocketed, we have seen significant increases in the incident rates of common co-morbidities of aging. Dementia has seen an exceptionally high rate of new diagnoses, with the Alzheimer’s Association reporting nearly six million Americans currently diagnosed.
It is important to understand that dementia isn’t a specific disease, but rather describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. Alzheimer’s disease is the most common cause of progressive dementia in older adults, though there are a number of other causes of dementia.
According to the Mayo Clinic, diagnosing dementia and determining its type can be challenging. A diagnosis of dementia requires that at least two core mental functions be impaired enough to interfere with daily living. They are memory, language skills, ability to focus and pay attention, ability to reason and problem-solve and visual perception.
However, it’s important to look at more than just the biomedical paradigm says Karen Love, executive director of the Dementia Action Alliance (DAA), a non-profit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists. Love believes there is only a bleak understanding of the condition and it’s time to change that narrative.
“There are huge misperceptions associated with dementia, which make a diagnosis seem like a gut punch,” stated Love. “If all you’ve ever heard are the negative things, you’re operating from a glass-half empty perspective. But the reality is you can still live a meaningful life with a dementia diagnosis.”
Love points to the Baby Boomers she works with every day who are standing up and saying, “NO, I’m not going to experience this dementia diagnosis in a negative way.” The DAA exists to bring people together to exchange ideas, form friendships and make professional connections. But most importantly, they work to create a better world in which people not only live, but thrive, with dementia.
“We help people understand that they are not alone, so they can pivot from grief and depression to a pathway of understanding,” said Love. “There is a misperception that people with dementia can’t continue to do the things they love or learn new things. That’s simply not true.”
Countering Dementia’s Impact
Consider Mike, a retired IT technician who is an Advisory Board member of the DAA. Mike received a dementia diagnosis 5 years ago. A few years later, he began feeling anxiety in the afternoons. Remembering that Mike used to enjoy drawing in his younger years, his wife suggested he take up painting to offer some relaxation. Mike taught himself to watercolor and now creates beautiful paintings that light up his home and those of his friends and family. Mike has found that doing things that are purposeful and meaningful to him such as watercoloring have a positive effect on his dementia symptoms.
“If you were just to consider the biomedical paradigm of Mike’s condition, physicians would discount this activity as mere hobby,” said Love. “But it’s so much more than that. It is enhancing his wellbeing and building a purpose. The more depressed and negative we feel, the more our brain declines. Positivity and engagement creates positive neuro pathways needed to reignite healthy parts of the brain.”
One doctor whom Love heralds as taking a broader, more holistic approach to caring for people living with dementia is Dr. Gayatri Devi, renowned neurologist and author of The Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias. In the book, Dr. Devi says “Alzheimer’s is really a disease with multiple different presentations, multiple different courses in people. It’s as individual as the person who gets the illness and many of the people with Alzheimer’s live productive, functional lives in the community.”
Dr. Devi believes that half of patients with moderate Alzheimer’s don’t get diagnosed. She writes: “What that means is that the percentage of people that we think about when we think of Alzheimer’s — the people in the nursing home — that’s a very, very small fraction of the entirety of the people who have the condition.”
Goodwin House Bailey’s Crossroads recently hosted a seminar with Dr. Devi, which also included a panel of people living with dementia and their caregivers.
If you have a loved one living with dementia, it is important to be proactive and have higher expectations for their capabilities. It is also important to continue supporting the things they love to do while looking for accommodations. For instance, if your loved one enjoys eating in restaurants, but has an increasing intolerance to the noise and crowds, consider dining out earlier in the day or after the more popular and busy meal times.
Love also recommends finding a social environment this is active and bright with peers living with pride and purpose. When looking for a residential senior living community, Love suggests making sure there is an emphasis on the importance of continued care for those with dementia.
Goodwin House Chief Operating Officer, Linda Lateana, agrees. Under a new strategic plan recently approved by the Goodwin House Incorporated Board of Trustees, a Dementia Leadership Team (DLT) was established to serve as a clearinghouse for all Goodwin House dementia programs, to coordinate dementia-specific initiatives, and develop dementia training programs.
As part of ongoing support leading up to this strategic plan, Jessica Peters, Manager of Assisted Living & Memory Care at Goodwin House Bailey’s Crossroads, began working on implementation of the Music and Memory program in February of 2015. This program brings personalized music into the lives of those with dementia through digital music technology. This program has grown and has offered well over 200 individualized playlists to residents throughout the continuum. Jessica recently discussed the value of this and other programs on a Leading Age podcast.
Expanding Dementia Awareness
Goodwin House also places a large emphasis on the training of all staff.
“Goodwin House communities have always met and exceeded the required dementia training for staff, but now we are taking the lead in our communities to ensure that all Goodwin House employees will become ‘dementia friends,’ that all direct care staff receive additional dementia training, and we also have included family members in some of the training,” stated Lateana.
Lateana credits Goodwin House communities for doing a good job in providing loving, exceptional care for people living with dementia and their families, but understands the organization needs to be a dementia-awareness champion within the organization as well as across the local area and beyond.
Ruth Reagan, Director of Social Work at Goodwin House Bailey’s Crossroads is leading the exploration for reaching out to local communities to become dementia friendly cities.
“There’s a wonderful initiative called Dementia Friendly America that wants people with dementia and their caregivers to be safe, supported and treated with respect in their neighborhoods,” stated Reagan. “The movement provides an action plan to encourage people to work together to create a dementia friendly culture. This fall, Goodwin House will begin working with organizations in our community to support this worthwhile effort.”
People living with dementia are active, vibrant and valued members of our communities. They are living the New Normal! Society need to shift the common perception to a glass-half full approach. As Karen Love remind us, “If you’re only looking for losses, that’s exactly what you’ll see.”
*For more information on dementia, including support resources, educational webinars and clinical trial information, please visit the National Alzheimer’s and Dementia Resource Center.