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. Webinar (August 2017)

 

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

 

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

 

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

 

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

 

Alzheimer’s Caregiving in the US (2009) Report (PDF)

 

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

 

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

 

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

 

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)