If you’ve ever visited a dementia care site, you’re bound to wonder how things got the way they are. Not because it’s all bad, but because many features of both day and residential care programs don’t seem to benefit the patients. Reliance on drugs leaves many people barely alert and the aesthetics of care sites are often distracting for lucid patients filled with anxiety. Family caregivers may know better ways to treat loved ones, but they can’t always manage care during the long course of the disease. Finally, better alternatives are emerging!
It’s exciting to learn that new treatment models are being used successfully in the field. In the May 20 issue of The New Yorker, author Rebecca Mead describes evolving care strategies that have provided residents with significant relief at the Beatitudes Campus in Phoenix, Arizona. Beatitudes describes its approach as one that “focuses on the comfort of the individual with dementia and empowers staff members to anticipate the needs of the resident.” Beatitudes trains professional caregivers to use a “person-directed approach to care.”
This strategy sits at the opposite end of the spectrum from most nursing homes. Even the finest, high-end dementia facilities organize everything — from administration of drugs, to deployment of staff — around the needs of the institution rather than those of the patient. Facility administrators might argue that people with dementia are often unable to communicate their needs when pressured for an explanation of what ails them. But staff members at Beatitudes engaged in deep study of their patients — and themselves — to create a service model that relies more on empathy than assumptions. Beatitudes caregivers took the extraordinary steps of spoon feeding each other and wearing incontinence diapers so they could learn what residents really experienced during a typical day.
After these experiments, lots of practices — including use of diapers — were thrown out the window. Staff members also began to realize something that most family caregivers learn early. Although words may fail dementia patients, “all behavior is communication.” This phrase is a mantra repeated by Tena Alonzo, Director of Education and Research at Beatitudes, who now uses quiet, calming methods for getting patients to disclose as best as they can what is causing their agitation.
The work of the Beatitudes Campus is based on ideas developed by British educator and psychologist, Thomas Kitwood. Not long before his death, he published his 1997 theories under the revealing title “Dementia Reconsidered: The Person Comes First.” His ideas have been influential in England and Belgium. Details will be featured in future posts here. For now, you can learn more about Beatitudes Campus care concepts by clicking here for background on their training model. May you discover some ideas that buoy you up.
Members of modern families are often separated by geography. When a parent’s dementia reaches the crisis point, choosing a residential facility can be very hard. It takes cooperation and research to find a site that offers quality care and shared geographic access.
My friend Rob and his siblings have moved their mother three times. Though the moves were necessary to ensure her care and safety, his mom resisted change. The first stop was an assisted living facility in Florida , her long-time state of residence. Her children were spread across the U.S., but she wanted to stay in Florida so they found a site where staff members monitored her safety and well-being on a daily basis. As her condition declined, it become harder for her children to oversee her care from a distance. Rob’s mom then moved to a second Florida facility with more supportive services. When her dementia advanced further, Rob finally moved her to Pennsylvania. After three moves, his family learned a lot about choosing facilities.
When deciding between providers, Rob’s family reviewed incident reports from each facility under consideration. Sites with many incidents may have serious problems with the delivery of care. Anyone can check the incident records of individual nursing homes by going to the Member of the Family website. Once there, you can click on your state, and compare the number of serious incidents reported at each facility. You can also determine whether a facility has been place on the National Watch list. Homes on the National Watch List have had recent survey violations or substantiated complaints of actual harm or immediate jeopardy to residents in their care.
Ultimately, Rob’s family selected a care facility that was close to Rob’s house. This proximity allows him to check on her every day. His siblings fly in periodically to do the same. The site had some violations but Rob felt they were due to the building’s large size. Residents are spread over 24 floors with various levels of care. He believed that choosing a nursing home near his house would allow him to make more visits to monitor his mom’s care. When I asked him whether he saw much variation in quality at her three care providers, Rob said, “There are problems in all these institutions. But being present as an advocate makes a huge difference.” He thinks his mom is getting better care in Pennsylvania, but that is “only because I’m such an active participant in her care.” In his experience, administrators appreciate family involvement as long as issues are presented in a calm, professional way. If he must discuss problems with them, he writes everything down and gives his letter to an administrator to make a record of the matter. He also reminded me that many people go in and out of a dementia patient’s room and families should never leave valuables there. His family learned this lesson the hard way when his father’s wedding band disappeared from his mom’s room.
Rob also suggests that families consider the type of care a loved one will need in the long run. At his mother’s current facility, she has to run out of money and qualify for Medicaid before she can be placed in a skilled nursing unit. Because there is a wait list for those Medicaid beds, she will get progressive care until a bed becomes available. If your loved one moves to an assisted living facility that has no skilled nursing, later on it may be tough to secure a bed at another site. All things considered, if you are considering a move for your loved one, planning ahead ought to come first.