Bob's Last Marathon

Felicia Greenfield, Penn Memory Center, presents an overview of the new nationwide model—Guiding an Improved Dementia Experience (or GUIDE)—announced by CMS recently. The goals of GUIDE include: (a) improving quality of life for people living with dementia by addressing their behavioral health and functional needs, coordinating their care for dementia and co-occurring conditions, and improving transitions between community, hospital, and post-acute settings; (b) reducing burden on unpaid caregivers by providing caregiver skills training, referrals to social services, 24/7 access to a support line, and respite services; and (c) preventing or delaying long-term nursing home care by enabling people living with dementia to remain safely in their homes for as long as possible.

Felicia Greenfield, Penn Memory Center, shares her learnings from the 2023 annual Alzheimer’s Association International Conference. She presents findings from the Penn Memory Center’s Time Together program, designed to offer opportunities for older adults to interact with college students while giving care partners a break. She summarizes sessions on improving outcomes for caregivers and ways to tailor programs for Black care partners and considering cultural factors in customizing programs. The Care Ecosystem from the University of California San Francisco, presented as a model to address gaps in care and prevent emergency room admissions, is also described. Findings from an evaluation of the effectiveness of the Alzheimer’s Association’s free 24-hour helpline are presented.

Dr. Steven Arnold offers a comprehensive overview of the expanding role of biomarkers in the diagnosis and monitoring of Alzheimer's disease and related dementias. Dr. Arnold notes that with new, highly sensitive and specific lab reagents and technologies, we can now detect the extremely low levels of tau, amyloid, and some other brain proteins that are produced in Alzheimer’s disease and leak out into the bloodstream. And in the search for new treatments for Alzheimer’s disease, biomarkers play an important role in expanding our understanding of the disease and enabling us to measure whether a new drug or other treatment is working.

Felicia Greenfield, LCSW and Executive Director of Penn Memory Center, explains the importance of getting a diagnosis when cognitive impairment is suspected, the process of getting a diagnosis, and the steps that can be taken after diagnosis. She suggests that understanding what lies ahead, securing resources for support, financial planning, and creating a safe environment are just a few examples of actions families can take to help maximize quality of life while living with dementia. Lifestyle changes, safe and effective ways to continue working if still employed, and strategies for engagement and socialization are a few topics she addresses.

Lena tells the story of how a series of events, over the course of years, finally brought her and Bob to the doctor’s office for Bob to be tested. She recalls how the diagnosis, painful as it was, opened the door to getting support and receiving the care that Bob needed to live well despite the many challenges they faced together. In her words, “As I watch people around me put off their testing, I wish I knew how to tell them that there is so much more to gain than to lose. Knowledge is power, even when knowing hurts.”

Noting that non-pharmacological approaches to care are considered the gold standard in caring for people living with dementia today, Felicia Greenfield explains the concept of person-centered care, what it is, and how to go about delivering it. Felicia cites the seminal work on dementia by scholar Tom Kitwood, who highlights relationship, uniqueness, and embodiment as the elements of personhood, or sense of self. She highlights the commonalties among models and practices of person-centered care, and shares six recommendations for delivering it. These include: really knowing the person with dementia—the unique and whole person; recognizing and accepting the person’s reality; identifying and supporting ongoing opportunities for meaningful engagement; nurturing and building authentic and caring relationships; maintaining a supportive community; and evaluating care practices regularly, making appropriate changes as needed.

Dr. Steven Arnold explains the underlying causes of dementia, some of which are treatable, and outlines the process for arriving at a diagnosis. He offers an overview of recent developments in anti-amyloid immunotherapies. He puts amyloid and tau—and the presence of plaques and tangles—in perspective as he explains what we know about Alzheimer’s disease today. According to Dr. Arnold, data from amyloid immunotherapies tells us that Alzheimer’s dementia is driven by more than amyloid plaques and tau tangles. He suggests that for people with dementia, our most effective treatment at present is good care, and that lifestyle and diet changes can help optimize brain function for everyone.

Dr. Jason Karlawish talks about living with dementia and disabling cognitive impairments in the context of today’s public policies that places the burden of care on the American family, and points out gaps in today’s public policies that must be remedied. He explains the concept of custodial care, and how long-term care services and supports are not included in Medicare. He speaks about the need to improve the quality of residential care and cites the success of government-backed programs in other countries. Additionally, Dr. Karlawish points out the importance of supportive decision making, and helping people in the early stages of the disease exercise their autonomy.

The resolved male caregiver, who may sometimes be described as “rigid as a pillar,” is highlighted in this podcast by psychologist Dr. Barry J. Jacobs. Dr. Jacobs explains how male caregivers who keep their feelings buried inside tend to struggle more and eventually burn out, while others who allow themselves to experience their own feelings and understand these internal signals can prevail. He offers advice for adult children on ways they can support their father to make caregiving a shared experience.

Dr. Arnold offers an overview of current understanding of Alzheimer’s disease, and lifestyle changes that can lower risks of disease or slow progression. He suggests that risk factors such as hearing loss, head injuries, cardiovascular risk factors and tobacco use all increase our risk of developing dementia and probably drive progression. He also points out increasing evidence that depression, loneliness, and anxiety can increase our vulnerability to dementia, likely through stress mechanisms. He answers common questions about dietary supplements and natural products.