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Caregiving
Research
and Reports
2004
Bookwala
J, Zdaniuk B, Burton L, Lind B, Jackson S, Schulz R. Concurrent and
long-term predictors of older adults’ use of community-based long-term
care services: the caregiver health effects study. J Aging Health.
2004;16:88-115.
Connell CM, Boise L, Stuckey JC, Holmes SB, Hudson ML. Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians. Gerontologist . 2004;44:500-507.
Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle C, Willan A, Viola R, Coristine M, Janz T, Glossop R. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ . 2004;170:1795.
Horowitz A, Goodman CR, Reinhardt JP. Congruence between disabled elders and their primary caregivers. Gerontologist . 2004;44:532-542.
McClendon MJ, Smyth KA, Neundorfer MM. Survival of persons with Alzheimer's disease: Caregiver coping matters. Gerontologist . 2004;44:508-519.
O'Rourke
N, Cappeliez P, Guindon S. Depressive symptoms and physical health of
caregivers of persons with cognitive impairment: analysis of reciprocal
effects over time. J Aging Health. 2003;15:688-712.
Silver
HJ, Wellman NS, Galindo-Ciocon D, Johnson P. Family caregivers of older
adults on home enteral nutrition have multiple unmet task-related training
needs and low overall preparedness for caregiving. J Am Diet Assoc.
2004;104:43-50.
2003
Amirkhanyan
AA, Wolf DA. Caregiver stress and noncaregiver stress: exploring the pathways
of psychiatric morbidity. Gerontologist. 2003;43:817-827.
Bernard
LL, Guarnaccia CA. Two models of caregiver strain and bereavement adjustment:
a comparison of husband and daughter caregivers of breast cancer hospice
patients. Gerontologist. 2003;43:808-816.
Gaugler JE, Kane RL, Kane RA, Clay T, Newcomer R. Caregiving and institutionalization
of cognitively impaired older people: utilizing dynamic predictors of
change. Gerontologist. 2003;43:230-241.
Hepburn
KW, Lewis M, Sherman CW, Tornatore J. The Savvy Caregiver Program: developing
and testing a transportable dementia family caregiver training program.
Gerontologist. 2003;43:908-915.
Montoro-Rodriguez
J, Kosloski K, Montgomery RJV. Evaluating a practice-oriented service
model to increase the use of respite services among minorities and rural
caregivers. Gerontologist. 2003;43:916-924.
Schulz
R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, Thompson L.
End-of-life care and the effects of bereavement on family caregivers of
persons with dementia. N Engl J Med. 2003;349:1936-1942.
2002
and earlier
Chappell
NL, Reid RC. Burden and well-being among caregivers: Examining the distinction.
Gerontologist. 2002;42:772-780.
Gaugler
JE, Kane RL, Kane RA. Family care for older adults with disabilities:
Toward more targeted and interpretable research. Int J Aging Hum Dev.
2002;54:205-231.
Navaie-Waliser
M, Feldman PH, Gould DA, Levine C, Kuerbis AN, Donelan K. When the caregiver
needs care: the plight of vulnerable caregivers. Am J Public Health.
2002;92:409-413.
Silver
HJ, Wellman NS. Family caregiver training is needed to improve outcomes
for older adults using home care technologies. J Am Diet Assoc. 2002;102:831-836.
Zhan
HJ. Chinese caregiving burden and the future burden of elder care in life-course
perspective. Int J Aging Hum Dev. 2002;54:267-290.
Abraham
PY, Berry ML. Needs of the family caregivers of frail elderly. Can
J Public Health. 1992;83:147-149.
Albert
SM. Do family caregivers recognize malnutrition in the frail elderly?
J Am Geriatr Soc. 1993;41:617-622.
Annerstedt
L, Elmstahl S, Ingvad B, et al. Family caregiving in dementia-an analysis
of the caregiver's burden and the "breaking-point" when home
care becomes inadequate. Scand J Public Health. 2000;28:23-31.
Bass
DM, Noelker LS, Rechlin LR. The moderating influence of service use on
negative caregiving consequences. J Gerontol B Psychol Sci Soc Sci.
1996;51(3):S121-131.
Braithwaite
V. Between stressors and outcomes: Can we simplify caregiving process
varibles? Gerontologist. 1996;36(1):42-53.
Braun
KL, Horwitz KJ, Kaku JM. Successful foster caregivers of geriatric patients.
Health Soc Work. 1988 Winter;13:25-34.
Brock
AM. Elder caregivers: Their challenges, trials, and triumphs. Nursingconnections.
1998;11(2):18-23.
Buckwalter
KC, Gerdner L, Kohout F, Hall GR, Kelly A, Richards B, Sime M. A nursing
intervention to decrease depression in family caregivers of persons with
dementia. Arch Psychiatr Nurs. 1999;13(2):80-88.
Bunting
SM. Stress on caregivers of the elderly. Adv Nurs Sci. 1989;11(2):63-73.
Burton
LM. Age norms, the timing of family role transitions, and intergenerational
caregiving among aging African American women. Gerontologist.1996;36:199-208.
Chentsova-Dutton
Y, Shuchter S, Hutchin S, Strause L, Burns K, Zisook S.
The psychological and physical health of hospice caregivers. Ann Clin
Psychiatry. 2000;12:19-27.
Coleman
CK, Piles CL, Poggenpoel M. Influence of caregiving on families of older
adults. J Gerontol Nurs. 1994; 20(11):40-56.
Court
C. Caring for the carers. Br Med J. 1995;11:617.
Guberman
N. Daughters-in-law as caregivers: How and why do they come to care? J
Women Aging. 1999;11:85-102.
Haggstrom
TM, Jansson L, Norberg A. Skilled carers' ways of understanding people
with Alzheimer's disease. Sch Inq Nurs Pract. 1998;12:239-266.
Herrman
H, Singh B, Schofield H, Eastwood R, Burgess P, Lewis V, Scotton R. The
health and wellbeing of informal caregivers: A review and study program.
Aust J Public Health. 1993;17:261-266.
Jones
DA, Peters TJ. Caring for elderly dependents: Effects on the carers’ quality
of life. Age Ageing. 1992;21:421-428.
Kane
RA, Kane RL, Illston LH, Nyman JA, Finch MD. Adult foster care for the
elderly in Oregon: A mainstream alternative to nursing homes? Am J
Public Health. 1991;81:1113-1120.
Kelley
LS, Buckwalter KC, Maas ML. Access to health care resources for family
caregivers of elderly persons with dementia. Nurs Outlook. 1999;47(1):8-14.
Kim
JJ, Keshian JC. Old old caregivers: A growing challenge for community
health nurses. J Comm Health Nurs. 1994;11:63-70.
Lawrence
RH, Tennstedt SL, Almy SL. Subject-caregiver response comparability on
global health and functional status measures for African Americans, Puerto
Rican, and Caucasian elders, and their primary caregivers. J Gerontol
B Psychol Soc Sci. 1997;52:S103-S111.
Martire
LM, Stephens AP, Atienza AA. The interplay of work and caregiving: relationships
between role satisfaction, role involvement, and caregivers' well-being.
J Gerontol B Psychol Soc Sci. 1997;52:S279-S289.
McCurry S, Teri L. Advance planning for dementia caregivers. J Am Geriatric
Soc. 1997;45:1102-1103.
Mills
PJ, Yu H, Ziegler MG, Patterson T, Grant I. Vulnerable caregivers of patients
with Alzheimer's disease have a deficit in circulating CD62L-T lymphocytes.
Psychosom Med. 1999;61:168-174.
Ory
MG, Hoffman RR 3rd, Yee JL, Tennstedt S, Schulz R. Prevalence and impact
of caregiving: A detailed comparison between dementia and nondementia
caregivers. Gerontologist. 1999;39:177-185.
Pruchno
RA, Burant CJ, Peters ND. Understanding the well-being of care receivers.
Gerontologist. 1997;37:102-109.
Pruchno
RA, Kleban MH, Michaels JE, Dempsey NP. Mental and physical health of
caregiving souses: Development of a causal model. J Gerontol. 1990;45:P192-199.
Rosenman
L, Le Brocque R, Carr S. The impact of caring upon the health of older
women. Aust J Public Health. 1994;18:440-444.
Seltzer
B, Vasterling J, Yoder J, Thompson K. Awareness of deficit in Alzheimer's
disease: Relation to caregiver burden. Gerontologist.1997;37:20-24.
Sisk
RJ. Caregiver burdern and health promotion. Int J Nurs Stud. 2000;37:37-43.
Sparks
MB, Farran CJ, Donner E, Keane-Hagerty E. Wives, husbands, and daughters
of dementia patients: Predictors of caregivers' mental and physical health.
Sch Inq Nurs Pract. 1998;12:221-234.
Travers
AF. Caring for older people. Carers. Br Med J. 1996;313:482-486.
Yates
ME, Tennstedt S, Chang BH. Contributors to and mediators of psychological
well-being for informal caregivers. J Gerontol B Sci Soc Sci. 1999;54:P12-22.
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Resources
2004
Grandma and Grandpa Taking Care of the Kids: Patterns of Involvement . Research brief discusses how grandparents are providing childcare; looks at careers of the grandparent, time spent, and type of care; Child Trends Research Center.
Navigating the care system: A guide for providers to help family caregivers . For professionals and consumers; information about programs and services in US health and long-term care systems; Family Caregiver Alliance.
Positive Aging Resource Center (PARC). For consumers and professionals; information and resources for older adults and caregivers, USDHHS.
2003
Taking
Care of Mom, Taking Care of Me: Coping With A Relative's Illness and Death.
For professionals and consumers, this book describes how to care
for an ailing parent and offers comfort and advice for those who find
themselves in the role of caregivers. The Judaica Press, Inc.
(800) 972-6201.
The
National Family Caregiver Support Program: Resource Guide (2003).
For professionals, this resource guide (PDF format)
produced by the Lewin Group provides information for the Aging Network
to help agencies find information on the National Family Caregiver Support
Program. Administration on Aging. (202) 619-0724.
2002
and earlier
A
Guide for Families: Conversation about Long Term Care (2002).
For consumers, this booklet was prepared by the American Health
Care Association and the National Center for Assisted Living, coaches,
adults, children, other family members and friends on how to broach the
subject with older adults. It also describes early warning signs that
services eventually may be needed. American Health Care Association.
(800) 321-0343.
Because
We Care (July 2001). For professionals and consumers, this
is an online resource guide to the growing number of Americans
who are caring for an older family member, adult child with disabilities,
or older friend. This Guide provides information and a range of suggestions
to make caregiving easier and more successful - whether you are the caregiver
or the person who ensures that your family member or friend receives the
best possible care from others. Administration on Aging. (202)
619-0724.
A
Caregiver Guide to Information and Resources. For consumers, this
brochure (stock# 16697) addresses concerns about finding home care
services. A free copy can be ordered from American
Association of Retired Persons. (800) 424-3410.
Caregiving
and Depression. For
consumers,
this is a fact sheet from the Family Caregiver Alliance (FCA) offers
advice to caregivers and their families on recognizing risk factors for
depression, such as feelings of exhaustion and isolation, associated with
the demands of Caregiving. The fact sheet contains resources and reading
lists for families and healthcare providers. Family Caregiver Alliance.
(800) 445-8106. www.caregiver.org
Caregiver
Compendium.
For
professionals, this is a compendium
of caregiver activities within HHS on caregiving. Department
of Health and Human Services, Administration on Aging. (202) 357-3582.
jean.lloyd@aoa.gov
Caregiver
Guide: Tips for Caregivers of People with Alzheimer's Disease.
For consumers, this guide, by the National Institute on Aging,
is designed for family and other caregivers of people with Alzheimer's.
National Institute on Aging. (800) 438-4380
Caregiver
Resources. For consumers, the estimated 1.7 million caregivers
in New York state can share tips on how to manage their time and
take better care of themselves through a newsletter published by the New
York State Coalition for the Aging (CFA). Each month, the Caregiver Assistance
News provides an idea exchange, a quick quiz and even a cartoon. New
York State Coalition for the Aging (CFA). (518) 465-0641.
Caregiver
Self-assessment Questionnaire Background Information. For professionals
and consumers, this Questionnaire will help caregivers analyze
their own behavior and health risks and, with their physician's help,
make decisions that will benefit both the caregiver and the patient. The
Caregiver Self-assessment Questionnaire will enable physicians to identify
and provide preventive services to an at-risk but hidden population and
improve communication and enhance the physician-family caregiver health
partnership. American Medical Association.
(312) 464-5000.
Dealing
With Physical Aggression in Caregiving: Physical and Non-Physical Interventions.
For professionals, this video and workbook training package teaches
the staff the procedures to help avoid and, if necessary, contain aggressive
behaviors while preserving the dignity of the resident. The videos teach
both nonphysical and physical interventions, along with the concept "A
Unified Staff Response System," that can bring prompt staff support
to deal safely with harmful situations. Each of the 3 videos (20-25 minutes
each) shows detailed demonstrations. The companion workbook includes reproducible
handouts. Health
Professionals Press.
(888) 337-8808.
Elder
Care: A Six Step Guide to Balancing Work and Family. For professionals
and consumers, this booklet is designed for employees and employers
struggling to balance work and family. Bringing Elder Care Home Publishing.
(508) 854-0431.
Network
of Care. For professionals and consumers, this is a comprehensive,
Internet-based community resource for older adults and people with
disabilities, including their caregivers and service providers. The easy-to-use
website provides an extensive directory to put people in touch with the
right services at the right time. It also offers vital information about
assistive devices, caregiving, day-to-day challenges and diseases, as
well as daily news from around the world concerning aging and disabilities.
This unique, one-stop information tool enables you to keep personal records,
create an online family meeting place, and communicate directly with elected
officials to make your voice heard in the legislative halls. Network Of
Care. www.Sacramento.networkofcare.org
Nutrition
Management & Restorative Dining for Older Adults: Practical Interventions
for Caregivers (January 2001). For professionals, in
this book, Chapters 1-3 explore the role of nutrition as
it relates to the needs of the older adult, nutrition assessment, and
the eating environment. Chapters 4-7 focus on eating skills, rehabilitation,
the effects of impaired swallowing, mobility, and cognitive and perceptual
deficits impacting nutrition status.
Chapters 8-10 discuss the latest approaches to nutrition management
of acute and chronic conditions, including enteral and parenteral nutrition
support issues.
American Dietetic Association. (800) 877-1600 ext. 5000
Resources
for Caregivers. For professionals, this guide can help caregivers
find a broad array of resources, books, publications, web sites and organizations
to help them with their tasks. The guide was produced by MetLife's Mature
Market Institute and the National Alliance for Caregiving. It will be
distributed through area agencies on aging and Title VI Native American
aging programs.
National Association of
Area Agencies on Aging. (202) 296-8130.
Respite:
What Caregivers Need Most (July 2001). For consumers, this Fact
Sheet from the Administration on Aging (AoA) is implementing a program
that will soon begin to offer respite and other services to some caregivers
who so desperately need a break. Administration on Aging.
(202) 619-0724.
The
Caregiver's Handbook. For consumers, this book
offers practical approaches to common caregiver problems. Staying healthy,
avoiding depression, remaining active, making friends, enjoying pleasurable
activities are an essential part of any human life, including those of
caregivers. Serving as the primary caregiver for an ill loved one should
not make life meaningless.
(716) 636-7531 http://wings.buffalo.edu/~drstall/
Together
We Care: Helping Caregivers Find Support. For professionals, this
booklet is a resource to direct caregivers to useful sources of
information, as well as stimulate additional programming to help the work
of caregivers. National Council on the Aging. (202) 479-1200.
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Web Links
Family
Caregiver Alliance <www.caregiver.org>
National
Family Caregiver Support Program - Caregiving Resources for the Aging
Network, Administration on Aging <www.aoa.gov/carenetwork/>
Resources
for Aging – The Caregiver Sourcebook
<www.ageinfo.com/>
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Last Updated:
09/17/2004
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