Condition-Specific Research

The Alliance has conducted condition-specific research on caregivers who support patients with Alzheimer’s disease and other forms of dementia, cancer, mental illness, multiple sclerosis, and diabetes. 


Alzheimer’s and Related Dementias 


Dementia Caregiving in the U.S. 

Dementia Caregiving in the U.S.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.

 

National Webinar (August 2017)
Join the National Alliance for Caregiving and the Alzheimer’s Association for a free, one-hour webinar on the latest stats on dementia caregiving in the United States. We’ll discuss the demography, challenges, and opportunities facing dementia caregivers as well as gaps in research and recommendations for further study. 


From Plan to Practice: Implementing Alzheimer’s in Your StateFrom Plan to Practice: Implementing Alzheimer’s in Your State White Paper (2014)

The National Alliance for Caregiving and the Alzheimer’s Foundation of America were pleased to offer a half-day conference in December 2013, titled From Plan to Practice: Implementing NAPA in Your State. Over 250 webinar participants from more than 39 states and the District of Columbia heard from federal and state policymakers involved in developing comprehensive plans to provide supports and services to people with Alzheimer’s disease and their family caregivers. Federal and state experts also provided best caregiver practices, tools, and strategies on how best to implement these action steps in states and localities. 

 

This White Paper is the next step in moving the vital conversation forward. It is our hope that state and local policymakers and advocates will find it useful in understanding the Alzheimer’s disease crisis facing the U.S., and the best practices that states are using to confront the challenges facing individuals with the disease, caregivers, healthcare professionals, policymakers and society as a whole.


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

Many studies have shown that the health of family caregivers can be adversely affected, especially as their caregiving continues and becomes more intense. This study looked at 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. For example, emergency room visits and hospital-based services doubled over that time. There was an overall 25% trend in increased use of all types of health services. The best predictor of this increased health care utilization was those caregivers who had fair or poor self-reported health at the beginning. Caregivers were asked to rate their health as Excellent, Very Good,
Good, Fair or Poor.

 

The median cost of health care service use was calculated for caregivers and non-caregivers. Healthcare for family caregivers providing care for someone with Alzheimer’s cost an average of $4,766 more per year.


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

This report describes the results of a study conducted to examine the impact of caring for a family member with Alzheimer’s or dementia on unpaid caregivers’ daily lives and psychological outlook. In particular, a goal of the study was to determine whether there are any positive outcomes from providing care to someone with this type of condition.

 

The survey asked family caregivers about the initial signs of the disease, the extent of care they provide, their caregiving tasks, details about their care recipient’s symptoms, and specific psychological changes and attitudinal outcomes they experienced.


Alzheimer’s Caregiving in the US Report (2009)

The purpose of this study is to present a portrait of family caregivers of individuals who have Alzheimer’s disease, dementia, or mental confusion. This portrait emerges from a national study of caregivers conducted in 2009, Caregiving in the U.S. 

 

The study examined:

  • Demographic characteristics of Alzheimer’s caregivers and care recipients
  • The nature of caregiving activities as well as whether other unpaid or paid caregivers also provide help
  • How caregivers’ work, social life, and health are affected by caregiving
  • Information needs and information sources
  • What public policies would support caregivers
  • Use of technology

Alzheimer’s Disease Caregiving Advisory Board Meeting Summary (2009)

On April 8, 2009, the Alzheimer’s Disease Caregiving Advisory Board, convened by the National Alliance for Caregiving, met to discuss how family caregivers and the medical community can work together to work in partnership with primary care physicians and neurologists in understanding the diagnosis and progression of Alzheimer’s Disease. To this end, a primary focus is the development and execution of feasible treatment strategies and working to improve the situation for Alzheimer’s patients.

 

The facilitated discussion was focused on the three questions: 

1. How can family caregivers and physicians best work together to develop and carry out therapeutic strategies for patients with Alzheimer’s?

2. What can nurse practitioners and other allied health professionals do, in concert with family caregivers, to improve the diagnosis and treatment of patients before they can be seen by a neurologist?

3. Through what type of formal process can family caregivers most effectively provide direct input into the development of a caregiver’s perspective into the Alzheimer’s treatment guidelines?


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

Families are the heart and soul of the health and long-term care system for an estimated 4.5 million people in the United States who have Alzheimer’s disease. This report provides new evidence of the overwhelming challenges that Alzheimer caregivers confront day in and day out, as they struggle to meet the needs of their loved ones and to balance the 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. We commissioned this additional analysis of the data to look specifically at caregivers of persons age 50 and older who are suffering from Alzheimer’s, dementia, or mental confusion and to compare them with caregivers of all other persons in the same age group.


Who Cares? Families Caring for Persons with Alzheimer’s Disease Report (1999)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. Every caregiving situation presents its own special challenge — whether care is provided for a spouse, a parent, a child, a sibling or a friend, and whatever the disease or disability that gives rise to the need for care. This study shows that Alzheimer caregiving is particularly
hard work and carries with it heavy costs—for families and for society. 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. 

 

The survey on which this report is based identified caregivers in the broadest sense of the word — from those who offer occasional assistance for a relative or friend living elsewhere to those who live with a family member who requires constant attention and help with every aspect of daily life. Among all of the caregivers interviewed, 22% were caring for a person who had Alzheimer’s disease or “mental confusion.” This report looks at this subset of caregivers to find out who they are, what they do, and how they compare with caregivers in general.


Predictors of Caregiver Burden – Dementia Caregivers

 

Predictors of Caregiver Burden in Caregivers of Individuals with Dementia (2011) (PDF)

 

Prevalence and Impact of Caregiving: A Detailed Comparison Between Dementia and Non-dementia Caregivers (2011) (PDF)

 


Cancer 

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)

 

Report Highlights: 

  • Approximately 2.8 million people are caring for someone whose main problem or illness is cancer.
  • The typical cancer caregiver is a 53 year old woman, typically with less than a college degree and less than $75,000 in household income.
  • Most cancer caregivers support a relative (88%), usually a parent or parent-in-law (44%), a spouse or partner (16%) or a sibling or sibling-in-law (14%).
  • A primary role of cancer caregivers is to interact with health care providers, agencies, and professionals on behalf of their loved one – 82% communicate with health care professionals on behalf of the care recipient, 76% monitor the severity of their loved one’s condition, and 62% advocate on behalf of their care recipient with providers, community services, and government agencies.
  • A high majority of cancer caregivers (80%) report that the care recipient has been hospitalized at least once in the past year, an event significantly less common among non-cancer caregivers (52%).
  • Cancer caregivers typically have “helpers” in care – almost eight in ten report that their loved one lives with another person and seven in ten report that others help provide unpaid care.
  • The typical cancer caregiver provides care for just under two years (1.9) compared to caregivers for other conditions, who typically provide care for an average of 4.1 years.
  • Cancer caregivers, on average, are spending 32.9 hours a week providing care to their loved one and nearly a third of cancer caregivers provide care for 40 hours a week or more.
  • Compared to non-cancer caregivers, cancer caregivers are much more likely (72%) to be conducting medical and nursing tasks for their loved one. More than four in ten of these caregivers provide help with medical and nursing tasks without any prior training or instruction.
  • Caring for someone with cancer is more emotionally stressful than other types of caregiving – 50% of cancer caregivers report that they felt “highly stressed.” Four in ten caregivers report that they need help managing emotional and physical stress.
  • One ongoing challenge for cancer caregivers is the need for support during advanced stages of illness, with 40% of caregivers indicating that they needed help making end-of-life decisions.

 


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 Allergan, Eli Lilly, Novartis, 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)

 

Open Data File – Caregivers of Adults with Mental Illness (SPSS)

 

 

 


Multiple Sclerosis 

 

Multiple Sclerosis Caregivers Study (2012)

 

 

 

 


Diabetes

 

Diabetes Caregivers Needs Assessment Survey (2009)