By Dr. Jeff Gardere
Many people live in fear of a dementia diagnosis for themselves or their loved ones, with little resources for how to prepare for one. Nearly 1 in 2 people will get dementia in their lifetime, a staggering statistic that shows the necessity of planning for aging and the end of life. In the Black community, multiple factors, including medical racism, contribute to individuals being diagnosed later and having greater cognitive impairment than their white counterparts.
In Apple TV’s recent miniseries The Last Days of Ptolemy Grey, Samuel L. Jackson portrays a man with dementia who is suddenly left without a caretaker. Many of the scenes in the show echo the realities for Black people with dementia. In early episodes, Ptolemy Grey is portrayed living in poor conditions, alone for days on end. This isolation is very real for many older adults.
Social isolation has been associated with about a 50% percent increased risk of dementia. According to 2020 findings by the National Academies, there are higher rates of social isolation in immigrant, LGBTQ and minority communities. The same study found that Black people are more likely to rely on family networks for care and support, making Ptolemy’s case even more difficult once his caregiver and nephew dies.
In the series, Ptolemy Grey also has multiple interactions with doctors. In the first episode, Grey’s caretaker speaks to a doctor about his rapid decline. The doctor, a Black man, connects with the caregiver on a personal level. Diversity within the healthcare system can increase trust and patient-provider concurrence. Ensuring that care teams look like the patients and loved ones they serve is an important aspect of improving end-of-life care.
Samuel L. Jackson decided to create this show after witnessing loved ones living with dementia and the lack of depictions of Black people with dementia in the media. This void in representation means that many people in our community don’t know the signs and symptoms of dementia or write these symptoms off as “old age.” Compassion & Choices is committed to raising awareness of the inequities in end-of-life care experienced by traditionally underserved communities so that more can be done to address these issues.
Compassion & Choices provides tools and resources for anyone seeking to prepare for a dementia diagnosis in their family. These tools walk an individual through the stages of dementia, and encourage them to choose the care they would want in each stage. They also help create questions for doctors during appointments that help individuals get the care they want, whether that’s life-prolonging treatment or less treatment as the disease progresses.