The best of times and the worst of times: Dementia care today
David Troxel, MPH
The famous opening sentence of Dickens' “A Tale of Two Cities” captures the state of dementia care today: the best of times and the worst of times.
It's the worst of times, because we are still struggling to find an effective, disease-altering medicine for dementia. Fifteen years have come and gone since the most recent FDA-approved drug (memantine, commercially known as Namenda formulations, approved in 2003) entered the market. Today, dementia not only is the sixth leading cause of death but the only one in the top 10 with no effective prevention or treatment — and the most expensive disease an American can have.
It's the best of times, however, in that awareness is growing that there is much we can do to improve quality of life for people with dementia, particularly those living in residential care (be it independent senior living, assisted living/memory care or skilled nursing). The right blend of people, programming and environment add up to what we call a therapeutic environment — an environment that is healing.
For 30 years, Virginia Bell and I have worked to create and sustain therapeutic environments that benefit people with dementia. In our view, this kind of dementia program embraces meaningful and innovative activities, good communication, skilled problem-solving around behaviors challenging for staff, and excellent staff training. In our new book, “The Best Friends Approach to Dementia Care” (Heath Professions Press, 2017), we recommend several contemporary best practices to consider adopting in your community.
- Get the life story out of the charts and into daily use. Electronic records are a marvel, but they sometimes can make this essential resident biography document more difficult for staff to access. Be sure your e-systems highlight key resident life story work, or add an additional “low-tech” element. Try keeping the completed life story in a binder or on small note cards in each person's name. Use it to say aloha to a resident who lived in Hawaii (evoking smiles and happy memories) or to sing a musician's favorite Louis Armstrong tune during med passes (potentially turning a “no” into a “yes”).
- Emphasize socialization. The relationships and activities that fill the days of a person with dementia are the best possible treatment for Alzheimer's disease and other dementias. Structure and routine help organize a day, but we have found that people with dementia are more resilient than we thought. They enjoy a sense of novelty. A great residential care program may have four or five excellent activities on the calendar and have staff members who take advantage of unstructured time to go for a short walk with a resident, talk, offer hand massages or do simple chores together. In a Best Friends program, we call this “activities done with engagement.”
- Move beyond person-centered care to relationship-centered care. That means coaching your staff about the importance of affection, warmth and empathy. In other words, putting the person before the task. Consider one of the most difficult tasks staff members have in residential dementia care: giving showers and baths. When a staff member first takes a moment to focus on the relationship — greeting a resident by name, offering a compliment and hug, and using life story information to discuss favorite recipes — the resident, we hope, will relax, feel a sense of trust and be more open to the personal care task. Adopting this Best Friends approach helps the task get done faster (and in a more rewarding way).
- Invest in creative staff training. A one-hour in-service taught once a month does little to build lasting staff skills. Organize mini-classes to be taught at a stand-up meeting or team huddle, set aside certain weeks or months to focus on a specific topic (e.g., life story week or a week focusing on role plays reinforcing successful communication strategies), offer some creative role plays or scavenger hunts, create a staff workbook for students to complete after each class and create some buttons or posters reinforcing some of your learning topics.
We've learned much from the culture change movement, particularly the power of creating a caring community in which everybody — residents, staff members and families — thrives. Residents with dementia, in particular, respond well to this caring and loving culture, rich in relationship and activity. The result will be a reduction in behavior challenging for staff and an increase in the staff's experience of success.
To end on a literary note inspired once again by that great British writer Charles Dickens, “A loving heart is the truest wisdom.”
David Troxel, MPH, is a writer and dementia care consultant who was the executive director of the Santa Barbara (California) Alzheimer's Association from 1994 to 2004. He also has been a family caregiver, supporting his mother, Dorothy, who passed away with Alzheimer's disease in April 2009. Troxel lives in Sacramento, CA, and together with his writing partner, Virginia Bell, MSW, developed the Best Friends approach to dementia care. Read more about their work at www.bestfriendsapproach.com or facebook.com/bestfriendsapproach.
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