Research and education to address the challenges of those struggling with Alzheimer’s disease.
The award winning movie Still Alice, for which Julianne Moore won a 2015 Oscar for Best Supporting Actress, has won the publics’ hearts for its moving portrayal of a female professor’s struggles due to early-onset dementia.
Here at the MGH Institute, we recently experienced a riveting evening hearing Greg O’Brien, an award-winning journalist and author who is documenting his struggles with the same neurocognitive disorder in his book: On Pluto: Inside the Mind of Alzheimer’s. It was part of the theme “Dignity With Dementia” that our first-year students are focusing on throughout the 2014-2015 academic year.
Having researched on the subject of dementia for years, I have noticed that a theme of struggle emerges as one reads, sees, or listens to the stories of people as they decline into the abyss of cognitive confusion.
My program of research has focused on identifying, gaining an in-depth understanding, and developing culturally sensitive interventions, to address those struggles. Initially, there is the struggle by the affected person and their loved ones that what they are experiencing is not normal forgetfulness. Then, the person and family members typically need multiple office visits to convince their primary care clinician that there is a serious loss in memory in order to be screened and obtain a referral to a specialist.
Despite the fact there are dementia resource centers, online information from the National Institutes of Health (NIH), National Institute on Aging (NIA), Alzheimer’s Association, and local support groups, I found that many caregivers of people with dementia remain unaware of them or fearful that they will be tracked and bothered by them.
From 1995 to 2001, the NIH, NIA, and National Institute of Nursing Research (NINR) sponsored the largest randomized trial (1,200 dyads) of diverse Alzheimer’s caregivers and their family members who were in middle stage dementia and expressing distressful behaviors. Called REACH, or Resources to Enhance Alzheimer’s Caregivers’ Health, six teams of investigators tested a variety of clinical, educational, and technology interventions that were designed to reduce caregiver burden and stress. We were pleased to find that they generated outcome evidence to support their use, and they were incorporated into caregiving practices.
Concurrently, I became the first nurse in the United States to join the emerging field of Gerontechnology – which focuses on investigating how to use technology with people who have dementia – that was started in Europe 30 years earlier. I saw the opportunity to further contribute to developing innovative technologies that offer new ways to address both personal and family struggles with serious memory loss at home, in the workplace, and in senior residential housing.
Recently, due to caregivers’ requests, we have been gaining a greater understanding of dressing issues and challenges. My team has begun applying the latest breakthroughs in emotional sensing technologies to develop a cognitive orthotic – a computer-assisted coaching aid – to assesses individuals’ dressing difficulties and intervene with personalized guidance.
Given the challenges associated with Alzheimer’s disease, caregiving remains in need of more product innovations coupled with knowledgeable clinicians who use research-based best practices to assist those struggling through every stage of dementia. I’m pleased that here at the IHP we are contributing on both aspects.