Program Guidance & Implementation

Following are important research studies and national surveys which provide useful information to providers and professionals in developing caregiver support programs.

• Family Caregiving in an Aging Society - [PDF Format] Paper summarizing the state of knowledge in caregiving which was presented by Sharon Tennstedt at AoA’s 1999 Symposium, "Longevity in the New American Century"
  
• AoA Annotated Family Caregiver Bibliography - This is divided into sections describing research on: A. Characteristics of Caregiving and Caregivers; and B. Caregiver Support Programs
  
• Economic Value of Informal Caregiving - Paper by Peter Arno, Carol Levine, and Margaret Memmott estimating the current market value for the care provided by unpaid family member and friends to disabled adults age 18 or older (1998)
  
• The Impact of Dementia Care: Unique Challenges Experienced by Family Caregivers - [PDF] This article by Marcia Ory, Jennifer Yee, Sharon Tennstedt, and Richard Schulz appears as a chapter in Handbook on Dementia Caregiving: Evidence-Based Interventions for Family Caregivers, R. Schulz, (Ed), 2000. It is copyrighted and used by permission of Springer Publishing Company, New York 10012 
  
• Informal Caregiving - This 1998 ASPE-AoA report, particularly “In-depth Focus on Informal Eldercare” (Pages 12-24), describes caregivers who are providing unpaid care to relatives and friends age 65 or older and is based on data from 1982 and 1994 National LTC Surveys and Informal Caregiving Supplement to the 1989 National LTC Survey.  The report has been used by AoA in justifying the need for NFCSP
  
• National Studies on National Alliance for Caregiving (NAC) Web Site - Scroll down and download the following studies
  
  • Family Caregiving in the US - This 1997 report by the National Alliance for Caregiving (NAC) and AARP is based on the National Survey on Family Caregiving which examined caregivers providing unpaid care to relatives or friends who are age 50 or older
    
  • Comparative Data Analysis of Caregivers to the Elderly: 1987 and 1997 - This 1997 NAC report compares 1987 AARP survey and 1997 National Survey on Family Caregiving data to show recent trends in caregiving
    
  • Study of Employer Costs for Working Caregivers - This MetLife 1997 report is based on the costs of caregiving to employers taken from National Survey on Family Caregiving
    
  • Juggling Study - This MetLife 1999 study, which utilizes a subset of respondents from the National Survey on Family Caregiving, measures the losses working caregivers experience in career development, salary and retirement income, and out-of-pocket-income as a result of their caregiving
    
• Who Cares? Family Caregiving for Persons with Alzheimer’s Disease - This  summary of the 1999 Alzheimer’s Association’s report on Alzheimer’s caregivers is based on an analysis of data from National Survey on Family Caregiving

ListServ & Technical Advisory Group Summaries