A Care Manager's Insight: Innovations in Dementia Care

After attending a clinical geriatric symposium at UCSD, I wanted to write about some of the things that were discussed there on dementia. I would also like to share about an article in The Atlantic* about a long-term care community in the Netherlands where residents with dementia are experiencing something unusual. The community also happens to be quite compelling to many memory care specialists from around the world who visit this unique village regularly.

Everyone is looking for answers to handling this incurable disease.

First, here are the facts and figures:

The Chief of Geriatric Psychiatry at McLean Hospital, Dr. Ipsit Vahia M.D., estimates that there are currently some 30 million people with dementia, and that number would likely reach over 80 million by 2040. To say this is overwhelming is an understatement.

Currently public health costs for dementia patients are estimated at over 800 billion dollars annually. Dementia is one of the most costly diseases, along with heart disease and cancer. It has been estimated that 30% of people over age 85 have the disease.

There is currently no cure for dementia. The status of research is that trials using anti-amyloid agents to reverse amyloidopathy have proven unsuccessful. Vaccines are in development and “anti-tau” agents are the next targets for intervention.

The medications used with dementia are: Donepezil, Rivastigmine, Galantamine, SSRI’s, Gabapentin, Trazodone, mood stabilizers and rarely benzodiazepines.

None of this clinical information helps much when you’ve got a loved one with the disease. If you have the disease, the one thing you most desperately need is something you cannot buy. It is not a medication or a treatment. What is most needed is to feel accepted and loved and to have a sense of belonging.

This brings me to the second part of this feature; I want to call your attention to a small village outside of Amsterdam called “Hogewey.” Here, over 150 residents with dementia are experiencing something groundbreaking; an environment that de-emphasizes illness and emphasizes community and belonging. CNN labels Hogewey a “dementia village.” Here, those diagnosed with dementia come and live together in a community where caregivers are dressed as normal people and 24-hour surveillance cameras monitor residents. There is only one door leading in and out of the town, which safely allows residents to feel and act like they are still functioning members of a society, rather than being trapped in a care ward.

This “village” seems to be doing a great job at producing results that clinical interventions have yet to duplicate.

Dr. Paul Newhouse, Director of Vanderbilt University’s Center for Cognitive Medicine, agrees. He says in an ABCNews article from 2012, “the environmental approaches to reducing both cognitive and behavioral problems associated with dementia are really the key to improving quality of life for these patients without excess medication.” Clearly, the power of connection and relationship in community cannot be overemphasized.

Another well-known study with 678 Catholic nuns, referred to as “The Nun Study,” found that in the nuns’ brains (studied after their deaths), who were identified to have dementia, the expression of the disease had been blunted. Among other preventive factors identified in the study, what was found to be in common with Hogewey, were groups of people living in supportive communities emphasizing positives instead of negatives; what remains instead of what is lost; joy and love instead of fear and isolation.

Until we have hope for either treatment, or a cure for this terrible disease, and communities (and funding) that can support more humane care structures and programs, may all of us care managers, those who work with dementia patients or have family members with the disease, recommit ourselves to loving and caring well for them.

May we find every opportunity to reinforce their sense of joy, dignity, connection and self-worth.

*Read more of this interesting article here:  https://www.theatlantic.com/health/archive/2014/11/the-dutch-village-where-everyone-has-dementia/382195/

If you have more questions about dementia or you need help managing the care of your loved one, Grace Care Management is here to support you. Give us a call at (760) 789-9177 for a free consultation.