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Behind the Numbers: Who's living with Alzheimer’s and Dementia

Who is impacted by Alzheimer’s and Dementia? 

About 1 in 9 Americans over the age of 65 are living with dementia. Almost two-thirds of this population are women, and Black Americans are twice as likely as their white counterparts to develop Alzheimer’s and other dementia related illnesses. Women are more likely than men to be diagnosed with  Alzheimer's primarily because they live longer, and the greatest risk factor for Alzheimer’s is age. Another reason these diagnoses are more prevalent amongst women is related to amyloid deposition, which is a build-up of a protein that can damage the blood–brain barrier. Having some amyloid deposition is important to the brain’s immune response, however in excess it can lead to Alzheimer’s development. Women generally have stronger immune systems than men, which makes excess Amyloid deposition more likely as they get older

The reasons why more Black Americans are diagnosed with Alzheimer’s disease is much less clear. 

As it stands, the risk of developing Alzheimer’s is higher for those living with heart disease and diabetes, both of which are also more common in the Black community. 

The pervasiveness of these significant Alzheimer’s risk factors among Black Americans are linked, unsurprisingly, with high rates of obesity, socioeconomic disparity, and lack of quality, culturally tailored medical care. All of these are due in large part to systemic inequities like institutional racism and classism, for example. With such a significant portion of America’s marginalized populations living with this debilitating and care-intensive disease, it is critical to understand not only how to support those living with dementia or Alzheimer’s, but also how to support those who care for people living with these particular illnesses. 

Who is caring for those living with Dementia?

Caregiving for those with Alzheimer’s and/or others with dementia-related illnesses is most common for women, who make up the majority of the caregiving population.

Daughters, in particular, make up about one-third of the caregiving population

While most of the caregiver population cares for a parent, about 12% cares for a spouse or partner, and about 15% for a non-relativeIn general, it is more common for a wife to provide care for a husband than vice versa.  The average age of general, unpaid caregivers is about 50 years old.  In general, unpaid, family caregiving is most common among

  • Hispanic Americans (21%), 

  • Black-Americans (20.3%), 

  • Asian-Americans (19.7%), and 

  • White Americans (16.9%). 

About 9% of caregivers identify as LGBTQ+. 

Common issues met by Alzheimer’s caregivers

Many caregivers of patients living with Alzheimer’s and dementia experience stressors that follow the course of the disease.

This can include increased anxiety in the early stages, depression and distress in the later stages, as well as complicated grief after the death of their loved one. Moreover, caregivers are less likely than the general population to look after their own physical health and are more likely to experience physical illness and hospitalization. They can also experience significant financial strains due to having to miss work or even leave their jobs to provide effective care. Likewise the costs of care, in conjunction with employment instability exacerbate this stress. Caregiver stress, defined as “the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress”, is a common phenomenon.  

Asian and Hispanic American caregivers of Alzheimer’s and dementia share disproportionately high caregiving burden and stress. Black American caregivers also experience very specific challenges as they are more likely to be in high-intensity care situations, report lower household incomes, and be the only unpaid caregiver providing help.  However, Black Americans and Native Americans tend to report lower levels of emotional stress and more personal satisfaction from their caregiving roles.14,15 This may be due to certain cultural practices that celebrate these roles.  Moreover, Black Americans, specifically, use government and community resources more often.

Caregivers of people living with Alzheimer’s and dementia face many challenges. Being a caregiver can take a toll on caregivers' mental and physical well-being, and financial strain. The disparities experienced by Asian, Hispanic, Black, and Native American patients and caregivers underscore the need for tailored support, recognizing cultural nuances, and fostering a deeper understanding of the varied experiences within these communities.

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