Maureen Hennessey, Ph.D. | SVP, Director, Value Transformation
Christopher Terrone | VP, Healthcare Insights, Market Access
Kirby Child | Former Intern, Medical Writing, Market Access
Alzheimer’s disease (AD) is the leading cause of dementia, affecting an estimated 6.9 million Americans aged 65 and above.[1] By 2040, it is expected that nearly 12 million Americans will be living with Alzheimer’s disease and related dementias (ADRD) and the majority of those individuals will likely be receiving in-home care provided by a family member or close friend.[2] Caregiving is essential to optimizing outcomes for individuals with ADRD and frequently involves assisting with activities of daily living and communicating and coordinating care with healthcare providers.[1],[3]
Caring for individuals with ADRD can be challenging, and the stressors and time demands of caregiving can adversely affect the physical, emotional, mental, and financial health of the caregiver. To better understand the impact of caregiving and the opportunities to provide caregiver support, Precision AQ conducted a survey of physicians and case managers who often or very often interact with individuals providing care for a family member with ADRD.
Challenges for caregivers
Survey respondents considered emotional or mental health challenges to be most burdensome to caregivers (see Figure 1). Financial strain is a major driver of these challenges, as is social isolation. This sense of isolation may result from the time required for the responsibilities of caregiving or from friends and family distancing themselves from the caregiver or the individual with ADRD. Caregivers may even experience affiliate stigma, a phenomenon whereby they internalize negative societal attitudes toward dementia, leading to feelings of shame and embarrassment. Research has shown that caregivers’ perceptions of stigma are associated with increased burden and a higher risk for reduced quality of life.[4],[5]
Our survey further investigated the social determinants of health (SDOHs) among ADRD caregivers. Survey respondents determined financial strain followed by mental health to be the top SDOHs for caregivers, who face substantial out-of-pocket costs related to medical and personal care expenses for the individual with ADRD (see Figure 2). Nearly 60% of caregivers experience work-related disruptions, such as arriving late, leaving early, or missing out on promotions, which can lead to reduced income and career opportunities.[1] Further, financial strain among caregivers is linked to adverse health outcomes, including increased rates of diabetes and depression and higher body mass index.[3]
Figure 2. Most impactful social determinants of health for caregivers
Race and ethnicity may also impact aspects of caregiving. Several studies have highlighted significant disparities in dementia care among different racial and ethnic groups. One study found it took 11% longer for Black Americans and 40% longer for Hispanic Americans to receive a diagnosis of dementia compared to non-Hispanic White Americans.[1] In our survey, more than 40% of survey respondents attested that race and ethnicity often or very often impact ADRD medication, while over one-third indicated that race and ethnicity affect diagnosis of ADRD (see Figure 3).
Figure 3. Impact of race and ethnicity on aspects of ADRD caregiving
Factors associated with medications included access to most current FDA-approved medications and affordability. Factors associated with diagnosis included delays in diagnosis and access to specialists.
Opportunities for pharmaceutical companies to reduce caregiver burden
By understanding the challenges that caregivers face, pharmaceutical companies can identify opportunities to help reduce caregiver burden. Our survey suggests that manufacturers are well-positioned to alleviate the strain on caregivers through financial assistance, support for medication access and adherence, and education programs (see Figure 4).
Figure 4. Opportunities for pharmaceutical manufacturers to support caregivers
Survey respondents also stressed the importance of manufacturer collaboration with patient advocacy groups and healthcare providers (see Figure 5).
Figure 5. Potential partners for pharmaceutical manufacturers
Based on these findings, here are 5 best practices for manufacturers to optimize caregiver support and reduce caregiver burden:
Conclusion
ADRD are conditions that affect not only the individual living with dementia, but also their family members and close friends. While there are positive aspects to caregiving, the responsibility of caring for a loved one with dementia can cause physical, emotional, mental, and financial strain, all of which impact the caregiver’s health and their ability to continue providing in-home care. Pharmaceutical manufacturers are uniquely poised to intervene in reducing caregiver burden through education and collaboration, optimizing outcomes for both caregivers and individuals living with ADRD.
To learn more how Precision AQ can help with this and other market access challenges, click here.
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[1] Alzheimer’s Association. 2024 Alzheimer’s disease facts and figures. Available at https://www.alz.org/alzheimers-dementia/facts-figures.
[2] Centers for Disease Control and Prevention. Caregiving for a person with Alzheimer’s disease or a related dementia. Available at https://www.cdc.gov/aging/caregiving/alzheimer.htm.
[3] Griffin JM, et al. Integrating family caregivers of people with Alzheimer’s disease and dementias into clinical appointments: Identifying potential best practices. J Appl Geron. 2020;39(11):1184-1194.
[4] Werner P, et al. Family stigma and caregiver burden in Alzheimer's disease. Gerontologist. 2012;52(1):89-97.
[5] Velilla L, et al. Analysis of family stigma and socioeconomic factors impact among caregivers of patients with early- and late-onset Alzheimer's disease and frontotemporal dementia. Scientific Reports. 2022;12:12663.
[6] Gaugler J, et al. The intersection of social determinants of health and family care of people living with Alzheimer’s disease and related dementias: A public health opportunity. Alzheimers Dement. 2023;19(12):5837-5846.
[7] UC Davis Health. Study finds disparities in diagnosis and treatment of dementia, January 24, 2024. Available at https://health.ucdavis.edu/news/headlines/study-finds-disparities-in-diagnosis-and-treatment-of-dementia/2024/01.