Special Populations

In addition to the Caregiving in the U.S. studies, NAC has partnered with a number of stakeholders to do a “deep dive” of the caregiving experience facing special populations of caregivers. From Alzheimer’s to retirement, rare disease to working caregivers, NAC has taken a closer look at the challenges facing caregivers across the lifespan.


Alzheimer's and Related Dementias

Research Recommendations (October 2017)

The following recommendations draw from findings in the Dementia Caregiving in the U.S. (February 2017) report which analyzes the experiences of providing unpaid care in the United States to a relative or friend diagnosed with Alzheimer’s disease, dementia, or other mental confusion, with the goals of both understanding the experiences of people caring for someone with dementia and identifying approaches to enhance and support this unique caregiving experience.

Dementia Caregiving in the U.S. Report (February 2017)

Dementia Caregiving in the U.S. documents the demographics of caregivers of people with dementia and how family caregiving impacts their lives. The report, from the National Alliance for Caregiving in partnership with the Alzheimer’s Association, draws on a nationally representative data set to identify the unique challenges of a friend or family member caring for a loved one with Alzheimer’s disease and other dementias.

Alzheimer’s Caregiver’s Healthcare Costs Increase as Person with Dementia Declines Study (2011)

This study examines Alzheimer’s caregivers in the REACH 1 project (Resources for Enhancing Alzheimer’s Caregiver Health) to see if their health use was different from non-caregivers and, if so, how much more that care was estimated to cost. The results: in the 18 months of the study, the caregivers’ self-reported health declined steadily and significantly. Two notable examples: emergency room visits and hospital-based services doubled over that time and there was an overall 25% trend in increased use of all types of health services.

What Made You Think Mom Had Alzheimer’s? Study (2011)

This study examines the impact of caring for a family member with Alzheimer’s or dementia on unpaid caregivers’ daily lives and psychological outlook. In line with other research, the survey revealed that many caregivers may be aware of cognitive impairment for the care recipient two years ahead of diagnosis.

Alzheimer’s Caregiving in the US Report (2009)

This study is a secondary data analysis of the national study of caregivers conducted in 2009, Caregiving in the U.S. conducted in partnership with AARP.

Families Care: Alzheimer’s Caregiving in the United States Report (2004)

This study illustrates the overwhelming challenges that dementia caregivers confront day in and day out, as they struggle to meet the needs of caregiving with competing demands of caregiving, work, and other family responsibilities. The data presented here is based on further analysis of a national survey of persons providing unpaid care for relatives and friends, Caregiving in the U.S., which was conducted in late 2003.

Who Cares? Families Caring for Persons with Alzheimer’s Disease Report (1999)

This report is a portrait of the overwhelming task of caring for a loved one who has Alzheimer’s disease — a task that at least 5 million American families carry out every day. It underscores the fact that these caregivers need help — physical and emotional support, education and training, financial assistance, and time away from constant caregiving demands. It demands a response — from the health care system, from the community, and from policymakers.

Autoimmune (Inflammatory Bowel Disease)

NAC, in partnership with the Crohn’s & Colitis Foundation and ImproveCareNow, conducted and released a new caregiving study of individuals with inflammatory bowel disease. Inflammatory bowel disease (IBD) is an umbrella term that describes chronic inflammation of the digestive tract. Riding the Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis (2019) focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD.

Researchers from Crimson Research at New Mexico State University (NMSU) conducted the research, with grant funding provided by the David R. Clare and Margaret C. Clare Foundation. In addition to demographic data on who is receiving care, the caring tasks provided and the amount of time spent providing care, several key findings emerged from this report, including the high percentages of caregivers working full-time or part-time while providing care, as well as the amount of time caregivers miss from work due to caregiving responsibilities.

It was clear from the study that caregivers needed support, with the report providing insight on who provides that support and caregivers’ perception of their capacity to provide care for the condition. The report also includes policy recommendations and next steps that can be taken in order to improve support for IBD caregivers and their families.


Riding the Roller Coaster: FULL Report (PDF)
The full study reports survey feedback from 728 individuals who reported providing unpaid care for someone with IBD. Survey questions related to demographics, caregiving situation, tasks, access to treatment and services, the caregiver’s wellbeing, and their time for outside activities.
Portrait of an IBD Caregiver
This infographic paints a portrait of those caring for individuals with IBD.

Nearly three million Americans are currently caring for someone with cancer, and many play a key role in managing cancer, including helping their loved one adhere to treatment, make informed decisions, and even address end-of-life concerns. After dementia, cancer is the second most prevalent condition that requires the assistance of a family caregiver.

The National Alliance for Caregiving, in partnership with the National Cancer Institute and the Cancer Support Community and with data analysis from Greenwald & Associates, developed this paper to identify the challenges facing these family caregivers.

Report: Cancer Caregiving in the US Report (2016) (PDF)


Diabetes Caregivers Needs Assessment Survey (2009)

Diabetes Caregivers Needs Assessment Survey (PDF)

Press Release (PDF)

Mental Illness

As many as 8.4 million Americans are providing care to an adult with an emotional or mental health issue. As some have said, mental illness is a disease that affects the whole family. Family caregivers feel the impact of the disease as they struggle to care for their loved ones and to bridge health care systems, mental health providers, and community supports.

The National Alliance for Caregiving, in partnership with Mental Health America and the National Alliance on Mental Illness, is honored to release a new study on the obstacles and opportunities facing caregivers of adults with mental illness. The study, On Pins & Needles: Caregivers of Adults with Mental Illness, identifies startling inadequacies in the U.S. health care system in meeting the needs of families who manage moderate-to-serious mental illness.

The study provides new data on 1,601 family caregivers of persons with moderate-to-severe mental illness including people caring for a loved one affected by bipolar disorder, schizophrenia, major depression or another mental illness. Findings include gaps in existing coverage and potential solutions. The report also includes public policy recommendations. The study was made possible through generous sponsorship from AllerganEli LillyNovartis, and Janssen Scientific Affairs, LLC.

Research & Resources:

On Pins & Needles: Caregivers of Adults with Mental Illness (2016) (PDF)

Dear Colleague Letter from Senators Ayotte and Blumenthal (PDF)

Video Remarks – Senator Richard Blumenthal

Final Report – On Pins and Needles: Caregivers of Adults with Mental Illness (PDF)

Final Report Policy Recommendations – On Pins and Needles: Caregivers of Adults with Mental Illness (PDF) 

Final Report Appendix A – Questionnaire (PDF)

Multiple Sclerosis

Multiple Sclerosis Caregivers Study (2012)

Full Study (PDF)

Press Release (PDF)

Rare Disease

The National Alliance for Caregiving, in partnership with Global Genes, is proud to present Rare Disease Caregiving in America (February 2018), a national study of 1,406 unpaid caregivers ages 18 and over living in the United States who provide care to a child or adult with a rare disease or condition. The National Institutes of Health estimates that there are approximately 7,000 rare diseases. In this study, over 400 unique rare diseases and conditions were captured, with the most commonly mentioned rare conditions as follows: Cystic Fibrosis (9%), Pulmonary arterial hypertension (4%), Atypical hemolytic uremic syndrome (2%), Ehlers-Donlos syndromes (2%), Fabry disease (2%), Congenital central hypoventilation syndrome (2%), and PANDAS (2%).

An independent Advisory Committee of national caregiving experts, clinicians, and patient/caregiving advocates reviewed the survey questionnaire, initial report findings, and final report before its release. Researchers at Greenwald & Associates administered the survey and conducted the data analysis.

The research made possible through funding from the following organizations: The Allergan FoundationAlexion Pharmaceuticals, Inc.AmgenAmicus TherapeuticsBiogen, the Family Support Research and Training Center (FSRTC) at the University of Illinois-Chicago, Mallinckrodt PharmaceuticalsRetrophinShireUltragenyx Pharmaceutical, Inc., and Vertex Pharmaceuticals.

Portrait of a Rare Caregiver
A one-page snapshot of the findings from the Rare Disease Caregiving in America study.

Rare Disease Caregiving in America (February 2018) (PDF)
Rare Disease Caregiving in America (February 2018) is a national research study capturing the experiences of more than 1,400 family caregivers of children and adults with a rare disease, condition, or disorder across 400 different diseases. Findings in this first-of-its-kind national snapshot paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources.

Appendix A – Rare Caregivers Questionnaire

This is the survey questionnaire that was used in the Rare Disease Caregiving in America research study.

Appendix B – Full List of Rare Diseases, Conditions, or Disorders

This is the list of rare diseases, disorders, and conditions captured in the Rare Disease Caregiving in America research study.

Caregiving Costs and Impact

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