Caregiving with Hope and Inspiration

Important developments in Alzheimer’s research and methods of caregiving are offering new hope for the treatment and care of dementia patients, according to experts who participated virtually in the 36^th Annual Caregiver’s Conference recently.

AARP Virginia helped sponsor the conference, which was presented by the Northern Virginia Dementia Care Consortium.  
Dr. Peter V. Rabins of John Hopkins University and author of The 36-Hour Day, cited three important developments in Alzheimer’s research. First, the incidence rate of new cases has declined overall over the past 10 to 20 years. Research indicates that lowering blood pressure and cholesterol as well as increasing physical activity may contribute to a decrease in Alzheimer’s.

Second, improved testing may help better diagnose Alzheimer’s and provide treatment to those who may benefit, he said. In the past, a definitive diagnosis may not have been made until after autopsy, but today, tests such as spinal fluid analysis and brain scans may help identify abnormalities sooner.

Finally, there are several new medications undergoing research studies that may help remove abnormal functions from the brain. Hopefully, these medications can also help improve memory and non-cognitive issues, he said.

Rabins also said he was hopeful that further research in genetic markers might contribute to better treatments in the future.

Alzheimer’s disease is named after German Dr. Alois Alzheimer who, in 1906, discovered abnormal structures called plaques and tangles in the brain of a deceased woman who had been demonstrating memory loss and other symptoms now associated with the disease.  

In 1968, Dr. Martin Roth in England conducted additional research, helping to define a broad definition of dementia as any disease in adulthood that affects aspects of thinking and impairs daily functioning.

Alzheimer’s patients live about 10 years, said Rabins, from the onset of the first symptoms until death.

There are three recognized stages of the disease. In the mild stage, recent memory is a primary symptom. Patients can recall with clarity events from their past, but can’t remember what day it is or what they had for dinner. Some executive function is also impaired, especially in performing basic tasks. They also have an inability to learn new things.

In the moderate stage, language, communications, and everyday activities are affected. The patient may not be able to completely do routine tasks such as getting dressed or brushing their teeth. At this stage, emphasized Rabins, it is important to recognize the issues and find a way around them to maximize the patient’s independence and preserve their dignity. For example, if the patient has trouble deciding what to wear but can still dress themself, choose clothing items and lay them out for them.

Dementia symptoms are more pronounced in the severe stage. The patient may lose control of bodily functions and the ability to communicate. At this stage, patients usually need hospice or other constant care.

The caring revolution in the treatment of dementia patients has only emerged in the last 50 years or so, said Rabins. It has made a difference to both caregivers and patients, because by learning about the disease and how it affects patients, caregivers can respond more effectively.

Rabins said another hopeful development is that researchers today are attacking Alzheimer’s in the same way they attack other diseases, learning more about how the abnormal plaques and tangles take over brain cells when normal cells die.

Mary Findley, author of The Joy of Dementia, said caregivers should look at a wide range of options in providing care for dementia patients.

Otherwise, “we are limited as to what we can accomplish,” she said. “I’m a big fan of hope.”  

Findley advocates a play and performance-based approach to dementia care, where caregivers and others involved in dealing with patients work together to create something new out of what already exists, rather than feeling a need to control or fix something.

The basic narrative of dementia, said Findley, is that there is nothing joyful or positive about the experience. In her approach, joy is used not to laugh at the dementia experience, but to encourage creativity.

Improvisation, or simple play, is an important part of this journey, Findley said. Actively listening, offering options and accepting offers, and building with the patient allows the caregiver to be in the moment with the patient and accept what they have to say.

To demonstrate, Findley conducted a short improvisation exercise with volunteer participants in two separate scenarios. She constructed a situation and invited the participants to discuss it one by one. In the first scenario, the participants prefaced their remarks with “Yes, but . . .,” while in the second, they used “Yes, and . . .” The “Yes, but . . .” conversation was viewed as negative and expressing denial, while the “Yes, and . . .” conversation was positive and demonstrated exciting possibilities.

Findley recommends creating a dementia ensemble to promote a joyful, playful environment, involving anyone engaged in the care process, which supports the patient as well as the caregivers.

“If we don’t find ways to grow emotionally, we are more limited than what we need to be,” she said.

She noted that there doesn’t always need to be a point to play, nor do we have to know what is ahead. The most important thing is to create an environment for dementia patients that gives them their best way to express themselves rather than paralyze them.

By accepting the dementia patient for who they are becoming--not who we want or need them to be--we give hope, said Findley.

The Northern Virginia Dementia Caregivers Consortium will host the 37th Annual Caregivers Conference on Friday, November 10, 2023. Bookmark their website to stay up-to-date as the conference is planned.