Our tour of duty will come to an end one day. But new generations of caregivers will be asking the same questions: What’s the best medical treatment for dementia? How will we manage the financial cost of care? Is there help out there for caregivers and families? Some communities are developing service models that may help future caregivers find answers faster.
Minnesota is one state working to address its dementia care problems in a pro-active way. After the passage of the National Alzheimer’s Project Act in 2011, the state created a working group to recommend programs that could serve growing numbers of people with the disease. Like my home state of Pennsylvania, Minnesota is facing a demographic shift that will result in a much higher population of elderly residents. The number of Minnesotans over age 65 is expected to double by 2030 to comprise about 20% of the state population. As part of this trend, the number of Alzheimer’s and other dementia patients is expected to increase dramatically.
The Minnesota working group, which has evolved into a coalition called Act On Alzheimer’s, has been developing a toolkit to help communities become more “dementia capable.” According to this group, a “dementia capable community” is “informed, safe and respectful of individuals with the disease [and] their families and caregivers, and provides supportive options that foster quality of life.”
The main element of their strategy is the implementation of a program called the New York University Caregiver Intervention (NYUCI). This service model was developed to educate caregivers about dementia and involve other family members in supporting the main caregiver. It also provides caregivers with methods of dealing with the behavioral aspects of the disease. Services include two individual and four family counseling sessions, referrals to weekly support groups, and telephone counseling. Research on the effectiveness of the program showed improved levels of caregiver wellbeing and an estimated median delay of 557 days before permanent residential placement of the person with dementia.
According to research documented in an article by Steven S. Foldes and Kirsten Hall Long, the NYUCI model reduces medical costs (mainly by delaying residential care) and may save caregivers 1.3 hours of time spent on daily caregiving tasks. Since every state will take its own approach to dealing with dementia, you may want to do your own research on what’s happening where you live. But if you are interested in learning more about the NYUCI model, or how your community can become “dementia capable”, check out this YouTube video which explains more about this concept.
Caregivers have a million jobs already. But if we recruit others to get involved in improving our community’s response to the disease, the caregiver role may be easier for those who come behind us. Minnesota’s slogan is “Everyone can act on Alzheimer’s, starting with you.” So go ahead and nudge somebody.
Disruptions can ruin our day even when we’re healthy. Traffic jams, cancelled doctor’s appointments, forgetting our keys… these things make us cranky and steal our sense of control over life. For people with dementia, disruptions in care can come with much worse consequences. Even a short hospital stay may have a terrible impact on their fragile health.
We all crave smooth sailing, no disruptions.
Ten days ago my mom had a sudden drop in blood pressure that landed her in the hospital for observation. She was only there for two days, but the change in routine was devastating. Now she’s having problems walking and her speech has deteriorated to an all time low. I’m not sure if these skills will be restored to their previous baseline. It’s an alarming situation.
We were lucky that when Mom went into the hospital my sister was able to get a day off work and stay there while the hospital staff conducted testing and administered treatment. But the regular staff did not have much training or sensitivity regarding the dementia component of my mom’s problems. The failure to understand how dementia interacts with other medical matters can add to the patient’s stress.
A September 2013 article in Science Daily, describes a study conducted by Donna M. Fick, Distinguished Professor of Nursing at Penn State. Professor Fick found a 32% incidence of new delirium among dementia patients who were hospitalized. Dementia patients who experienced delirium stayed in the hospital several days longer than patients without delirium, and showed a decline in physical and mental abilities at one month follow up visits. Fick believes, “This study is important, as delirium is often overlooked and minimized in the hospital setting, especially in persons with dementia.”
Another study by Dr. Tamara Fong, a Harvard researcher, found that hospitalization seems to increase the chances of Alzheimer’s patients moving into a nursing home — or even dying — within the subsequent year. Although more research must be done to determine the actual cause and effect here, William Thies of the Alzheimer’s Association says “It is perfectly clear that hospitalization is very hard on people with Alzheimer’s disease.”
There are some things families can do to minimize the impact of hospital stays:
- Thies advises families to be alert for any new symptoms and seek care early to avoid hospitalization. It’s also better to learn to manage Alzheimer’s behavioral problems — such as hallucinations — before they escalate.
- When a hospital stay is unavoidable, work with staff at the medical center to minimize delirium by avoiding nighttime disruptions of patient sleep, and limiting time in the emergency room.
- When possible, a family member should stay at the hospital to reassure the patient and make sure they have familiar items like reading glasses or things that bring them comfort.
My family didn’t know all these things two weeks ago. I hope you can protect your loved ones by learning from our experience.