Blackburn J.A., Dulmus C.N. (Editors). Handbook of gerontology: evidence-based approaches to theory, practice, and policy

Подождите немного. Документ загружается.

446 E

VIDENCE

-B

ASED

AMILY AND

OMMUNITY

RACTICE

services delivered in institutional settings that are not covered in community-

based settings. While most states have obtained waivers to use Medicaid funds

to cover home- and community-based services (HCBS), the needs of family

members are not treated as a legitimate basis for eligibility for such services.

Most HCBS waiver programs treat family members as resources available to pro-

vide assistance to dependent elders. Services are not offered for the benefit of

family caregivers, nor are the strengths and needs of family members assessed

(Family Caregiver Alliance, 2006a, 2006b).

The one exception to this trend is the National Family Caregiver Support Pro-

gram. Yet the NFCSP is very uneven across states and within states as to the

types services made available to family caregivers. As Feinberg and Newman (in

press) note, the modest level of funding for the NFCSP has left substantial gaps in

caregiver services. These gaps limit the choices of caregivers and prevent them

from obtaining services that best meet their needs. Consequently, a significant

challenge for social workers who are attempting to meet the needs of family care-

givers continues to be the lack of services. Long-term care reform is needed. Such

reform would recognize the family as the primary source of care and include le-

gitimate support services. Such recognition by policy makers will require strong

advocacy efforts from families, social workers, and provider organizations. Until

that time, family caregivers will continue to be the unsung and undersupported

heroes of elder care.

REFERENCES

Acton, G. J., & Kang, J. (2001). Interventions to reduce the burden of caregiving for

an adult with dementia: A meta-analysis. Research in Nursing and Health, 24(5),

349–360.

AHRQ Research Report. (2001). The characteristics of long-term care users (AHRQ Publica-

tion No. 00-0049). Rockville, MD: Agency for Healthcare Research and Quality.

Anhensel, C., Pearlin, L., Mulan, J., Zarit, S., & Whitlach, C. (1995). Profiles in caregiving:

The unexpected career. San Diego, CA: Academic Press.

Arno, P. S. (2006, January 25–27). Economic value of informal caregiving: 2004. Paper pre-

sented at the Care Coordination and the Caregiver Forum, Department of Veteran Af-

fairs, National Institute of Health, Bethesda, MD.

Austin, C. D., & McClelland, R. W. (1996). Case management practice. Milwaukee, WI: Fam-

ilies International.

Barusch, A. S., & Spaid, W. M. (1996). Spouse caregivers and the caregiving experience:

Does cognitive impairment make a difference? Journal of Gerontological Social Work,

25(3/4), 93–106.

Bass, D. M., McClendon, M. J., Brennan, P. F., & McCarthy, C. (1998). The buffering effect

of a computer support network on caregiver strain. Journal of Aging and Health, 10(1),

20–43.

Bass, D. M., & Noelker, L. S. (1996). The moderating influence of service use on negative

caregiving consequences. Journals of Gerontology: Psychological Sciences and Social Sci-

ences, 51B, S121.

Baumgarten, M., Lebel, P., Laprise, H., Leclerc, C., & Quinn, C. (2002). Adult day care for

the frail elderly: Outcomes, satisfaction, and cost. Journal of Aging and Health, 14, 237.

Beach, S. R., Schulz, R., Williamson, G. M., Miller, L. S., Weiner, M. F., & Lance, C. E.

(2005). Risk factors for potentially harmful informal caregiver behavior. Journal of the

American Geriatrics Society, 53(2), 255–261.

Family Caregiving 447

Beach, S. R., Schulz, R., Yee, J. L., & Jackson, S. (2000). Negative and positive health effects

of caring for a disabled spouse: Longitudinal findings from the caregiver health ef-

fects study. Psychology and Aging, 15(2), 259–271.

Bookwala, J., Yee, J. L., Schulz, R., Williamson, G. M., Shaffer, D. R., & Parmelee, P. A.

(2000). Caregiving and detrimental mental and physical health outcomes. In G. M.

Williamson, P. A. Parmelee, & D. R. Shaffer (Eds.), Physical illness and depression in older

adults: A handbook of theory, research, and practice (pp. 93–131). New York: Kluwer Aca-

demic/Plenum Press.

Bourgeois, M. S., Schulz, R., & Burgio, L. (1996). Interventions for caregivers of patients

with Alzheimer’s disease: A review and analysis of content, process, and outcomes.

International Journal of Aging and Human Development, 43, 35–92.

Braithwaite, V. (1996). Understanding stress in informal caregiving: Is burden a problem

of the individual or of society? Research on Aging, 18(2), 139–173.

Braithwaite, V. (2000). Contextual or general stress outcomes: Making choices through

caregiving appraisals. Gerontologist, 40(6), 706–717.

Brody, E. M. (1990). Women in the middle: Their parent-child years. New York: Springer.

Brody, E. M., Litvin, S. J., Hoffman, C., & Kleban, M. H. (1995). Marital status of caregiv-

ing daughters and co-residence with dependent parents. Gerontologist, 35(1), 75–85.

Brown, R., Pain, K., Berwald, C., Hirschi, P., Delehanty, R., & Miller, H. (1999). Distance

education and caregiver support groups: Comparison of traditional and telephone

groups. Journal of Head Trauma Rehabilitation, 14, 257.

Burgener, S. C., Bakas, T., Murray, C., Dunahee, J., & Tossey, S. (1998). Effective caregiv-

ing approaches for patients with Alzheimer’s disease. Geriatric Nursing, 19(3), 121–126.

Burgio, L. D., Solano, N., Fisher, S. E., Stevens, A., & Gallagher-Thompson, D. (2003).

Skill-building: Psychoeducational strategies. In D. W. Coon, D. Gallagher-Thompson,

& L. W. Thompson (Eds.), Innovative interventions to reduce dementia caregiver distress: A

clinical guide (pp. 119–138). New York: Springer.

Burton, L. C., Newsom, J., Schulz, R., Hirsch, C. H., & German, P. S. (1997). Preventative

health behaviors among spousal caregivers. Preventative Medicine, 26, 162–169.

Call, C. T., Finch, M. A., Huck, S. M., & Kane, R. A. (1999). Caregiver burden from a social

exchange perspective: Caring for older people after hospital discharge. Journal of Mar-

riage and the Family, 61, 688–699.

Campbell, L. D., & Martin-Matthews, A. (2003). The gendered nature of men’s filial care.

Journals of Gerontology: Psychological Sciences and Social Sciences, 58B(6), S350–S358.

Caro, F. G. (in press). Introduction: Family and aging policy [Special issue]. Journal of

Aging and Social Policy, 18(3/4).

Caserta, M. S. (1987). Caregivers to dementia patients: The utilization of community ser-

vices. Gerontologist, 27(2), 209–214.

Chappell, N. L., & Reid, R. C. (2002). Burden and well-being among caregivers: Examin-

ing the distinction. Gerontologist, 42(6), 772–780.

Cicirelli, V. G., Dwyer, J. W., & Coward, R. T. (1992). Siblings as caregivers in middle and

old age. In J. W. Dwyer & R. T. Coward (Eds.), Gender, families, and elder care

(pp. 84–101). Newbury Park, CA: Sage.

Clark, M., & Huttlinger, K. (1998). Elder care among Mexican American families. Clinical

Nursing Research, 7(1), 64–81.

Coe, M., & Neufeld, A. (1999). Male caregivers’ use of formal support. Western Journal of

Nursing Research, 21(4), 568–588.

Cook, J. A., & Heller, T. (1999). The effect of support group participation on caregiver

burden among parents of adult offspring with severe mental illness. Family Relations,

48, 405.

448 E

VIDENCE

-B

ASED

AMILY AND

OMMUNITY

RACTICE

Coon, D. W., Gallagher-Thompson, D., & Thompson, L. W. (2003). Innovative interventions

to reduce dementia caregiver distress. New York: Springer.

Coon, D. W., Thompson, L., Steffen, A., Sorocco, K., & Gallagher-Thompson, D. (2003).

Anger and depression management: Psychoeducational skill training interventions for

women caregivers of a relative with dementia. Gerontologist, 43(5), 678–689.

Cox, C. (1993). Service needs and interests: A comparison of African American and White

caregivers seeking Alzheimer’s assistance. Journal of Alzheimer’s Care and Related Disor-

ders and Research, 8(3), 33–40.

Cox, C. (1997). Findings from a statewide program of respite care: A comparison of ser-

vice users, stoppers, and nonusers. Gerontologist, 37(4), 511–517.

Czaja, S. J., & Rubert, M. P. (2002). Telecommunications technology as an aid to family

caregivers of persons with dementia. Psychosomatic Medicine, 64(3), 469–476.

Delgado, M., & Tennstedt, S. (1997a). Making the case for culturally appropriate community

services: Puerto Rican elders and their caregivers. Health and Social Work, 22, 246–255.

Delgado, M., & Tennstedt, S. (1997b). Puerto Rican sons as primary caregivers of elderly

parents. Social Work, 18(2), 125–134.

Dellasega, C., & Zerbe, T. M. (2002). Caregivers of frail rural older adults: Effects of an

advanced practice nursing intervention. Journal of Gerontological Nursing, 28, 40–49.

Depp, C., Krisztal, E., Cardenas, V., Oportot, M., Mausbach, B., Ambler, C., et al. (2003).

Treatment options for improving wellbeing in dementia family caregivers: The case

for psychoeducational interventions. Clinical Psychologist, 7(1), 21–31.

Diehl, J., Mayer, T., Foerstl, H., & Kurz, A. F. (2003). A support group for caregivers of pa-

tients with frontotemporal dementia. Dementia: The International Journal of Social Re-

search and Practice, 2(2), 151–161.

Dilworth-Anderson, P., Canty Williams, I., & Gibson, B. E. (2002). Issues of race, ethnicity,

and culture in caregiving research: A 20-year review (1980–2000). Gerontologist, 42(2),

237–272.

Dilworth-Anderson, P., & Gibson, B. E. (2002). The cultural influence of values, norms,

meanings, and perceptions in understanding dementia in ethnic minorities. Alzheimer

Disease and Associated Disorders, 16, S56-S63.

Donaldson, C., & Burns, A. (1999). Burden of Alzheimer’s disease: Helping the patient

and caregiver. Journal of Geriatric Psychiatry and Neurology, 12, 21–28.

Doress-Worters, P. B. (1994). Adding elder care to women’s multiple roles: A critical re-

view of the caregiver stress and multiple roles literature. Sex Roles: A Journal of Re-

search, 31(9/10), 597–617.

Dwyer, J. W., & Conrad, R. T. (Eds.). (1992). Gender and family care of the elderly. Newbury

Park, CA: Sage.

Dziegielewski, S. F., & Ricks, J. L. (2000). Adult day programs for elderly who are men-

tally impaired and the measurement of caregiver satisfaction. Activities, Adaptation and

Aging, 24(4), 51–64.

Family Caregiver Alliance. (2006a). A national consensus development conference: Vol. 1.

Caregiver assessment—Principles, guidelines, and strategies for change. San Francisco: Na-

tional Center on Caregiving at Family Caregiver Alliance.

Family Caregiver Alliance. (2006b). A national consensus development conference: Vol. 2.

Caregiver assessment: Voices and views. San Francisco: National Center on Caregiving at

Family Caregiver Alliance.

Farkas, J. I., & Himes, C. L. (1997). The influence of caregiving and employment on the

voluntary activities of midlife and older women. Journals of Gerontology: Psychological

and Social Sciences, 52B(4), 180–189.

Family Caregiving 449

Farran, C. J., Miller, B. H., Kaufman, J. E., & Davis, L. (1997). Race, finding meaning, and

caregiver distress. Journal of Aging and Health, 9(3), 316–333.

Feinberg, L. F., & Newman, S. L. (in press). Preliminary experiences of the state in imple-

menting the National Family Caregiver Support Program: A 50-state study. Interna-

tional view on family and aging policy [Special issue]. Journal of Aging and Social Policy,

18(3/4).

Forester, A., Young, J., & Langhorne, P. (1999). Systematic review of day hospital care for

elderly people: The day hospital group. British Medical Journal(318), 837–841.

Franks, M., & Parris Stephens, M. A. (1996). Social support in the context of caregiving

husbands’ provision of support to wives involved in parent care. Journals of Gerontol-

ogy: Psychological and Social Sciences, 51B(1), P43–P53.

Fredriksen, K., & Scharlach, A. E. (1997). Caregiving and employment: The impact of

workplace characteristics on role strain. Journal of Gerontological Social Work, 28(4), 3–20.

Gallagher-Thompson, D. (1994). Direct services and interventions for caregivers: A re-

view of extant programs and a look to the future. In M. H. Cantor (Ed.), Family caregiv-

ing: Agenda for the future (pp. 102–122). San Francisco: American Society on Aging.

Gallagher-Thompson, D., Lovett, S., Rose, J., McKibbin, C., Coon, D., & Futterman, A.

(2000). Impact of psychoeducational intervention on distressed family caregivers. Jour-

nal of Clinical Geropsychology, 6, 91–110.

Gaugler, J. E., Edwards, A. B., Femia, E. E., Zarit, S. H., Stephens, M. A., Townsend, A.,

et al. (2000). Predictors of institutionalization of cognitively impaired elders: Family

help and the timing of placement. Journals of Gerontology: Psychological Sciences and So-

cial Sciences, 55B(4), P247–P255.

Gaugler, J. E., Jarrott, S. E., Zarit, S. H., Stephens, M.-A. P., Townsend, A., & Greene, R.

(2003). Adult day service use and reductions in caregiving hours: Effects on stress and

psychological well-being for dementia caregivers. International Journal of Geriatric Psy-

chiatry, 18(1), 55–62.

George, L. K., & Gwyther, L. P. (1986). Caregiver well-being: A multidimensional exami-

nation of family caregivers of demented adults. Gerontologist, 26(3), 253–259.

Gottlieb, B. H., & Johnson, J. (2000). Respite programs for caregivers of persons with de-

mentia: A review with practice implications. Aging and Mental Health, 4(2), 119–129.

Gwyther, L. P., & Ballard, E. L. (1990). Overcoming barriers to appropriate service use: Effec-

tive individualized strategies for Alzheimer’s care. Durham, NC: Duke University Center

for Study of Aging.

Harding, R., & Higginson, I. J. (2003). What is the best way to help caregivers in cancer

and palliative care? A systematic literature review of interventions and their effective-

ness. Palliative Medicine, 17, 63.

Henderson, J. N., & Gutierrez-Mayka, M. (1992). Ethnocultural themes in caregiving to

Alzheimer’s disease patients in Hispanic families. Clinical Gerontologist, 11, 59–74.

Hill, G. J. (in press). State policy decisions in the 1990s with implications for the financial

well-being of later-life families: International view on family and aging policy [Special

issue]. Journal of Aging and Social Policy, 18(3/4).

Hooyman, N. R., & Gonyea, J. (1995). Social services and social support. In D. S. Foster

(Ed.), Feminist perspectives on family care: Vol. 6. Policies for gender justice (pp. 271–272).

Thousand Oaks, CA: Sage.

Horowitz, A. (1985). Family caregiving to frail elderly. Annual Review of Gerontology and

Geriatrics, 5, 194–246.

Ishii-Kuntz, M. (1997). Intergenerational relationships among Chinese, Japanese, and Ko-

rean Americans. Family Relations, 46, 23–32.

450 E

VIDENCE

-B

ASED

AMILY AND

OMMUNITY

RACTICE

Janevic, M. R., & Connell, C. M. (2001). Racial, ethnic, and cultural differences in the de-

mentia caregiving experience: Recent findings. Gerontologist, 41(3), 334–347.

Johansson, J., & Sundstrom, G. (in press). Polices and practices in support of family care-

givers: Filial obligations redefined in Sweden. International view on family and aging

policy [Special issue]. Journal of Aging and Social Policy, 18(3/4).

Kiecolt-Glaser, J., Glaser, R., Gravenstein, S., Malarkey, W., & Sheridan, J. (1996). Chronic

stress alters the immune response to influenza virus vaccine in older adults. Proceed-

ings of the National Academy of Sciences, USA, 93, 3043–3047.

Kiecolt-Glaser, J., Maruchas, P., Malarkey, W., Mercado, A., & Glaser, R. (1995). Slowing of

wound healing by psychological stress. Lancet, 346(8984), 1194–1197.

Knight, B. G., Lutzky, S. M., & Macofsky-Urban, F. (1993). A meta-analytic review of in-

terventions for caregiver distress: Recommendations for future research. Gerontologist,

33(2), 240–248.

Knight, B. G., & McCallum, T. J. (1998). Heart rate reactivity and depression in African-

American and White dementia caregivers: Reporting bias or positive coping? Aging

and Mental Health, 2(3), 212–221.

Knight, B. G., Silverstein, M., McCallum, T. J., & Fox, L. S. (2000). A sociocultural stress

and coping model for mental health outcomes among African American caregivers in

southern California. Journals of Gerontology: Psychological and Social Sciences, 55B(3),

P142–P150.

Kosloski, K., & Montgomery, R. J. V. (1994). Investigating patterns of service use by fami-

lies providing care for dependent elders. Journal of Aging and Health, 6, 17–37.

Kosloski, K., & Montgomery, R. J. V. (1995). The impact of respite use on nursing home

placement. Gerontologist, 35(1), 67–74.

Kosloski, K., Montgomery, R. J. V., & Karner, T. X. (1999). Differences in the perceived

need for assistive services by culturally diverse caregivers of persons with dementia.

Journal of Applied Gerontology, 18(2), 239–256.

Kosloski, K., Montgomery, R. J. V., & Youngbauer, J. (2001). Utilization of respite services:

A comparison of users, seekers, and nonseekers. Journal of Applied Gerontology, 20(1),

111–132.

Kosloski, K., Schaefer, J., Allwardt, D., Montgomery, R. J. V., & Karner, T. (2002). The role

of cultural factors on clients’ attitudes toward caregiving, perceptions of service deliv-

ery, and service utilization. Home Health Care Services Quarterly(3/4), 65–88.

Kramer, B. J. (1997). Gain in caregiving experience: Where are we? What next? Gerontolo-

gist, 37, 218–232.

Kramer, B. J., & Kipnis, S. (1995). Eldercare and work-role conflict: Toward an under-

standing of gender differences in caregiver burden. Gerontologist, 35(3), 340–349.

Laditka, J. N., & Laditka, S. B. (2001). Adult children helping older parents: Variations in

likelihood and hours by gender, race, and family role. Research on Aging, 23(4),

429–456.

Lawton, M. P., Rajagopal, D., Brody, E., & Kleban, M. H. (1992). The dynamics of caregiv-

ing for a demented elder among Black and White families. Journal of Gerontology: Social

Sciences, 47, S156–S164.

Levesque, L., Cossette, S., & Laurin, L. (1995). A multidimensional examination of the

psychological and social well-being of caregivers of a demented relative. Research on

Aging, 17(3), 332–361.

Levesque, L., Ducharme, F., & Lachance, L. (1999). Is there a difference between family

caregiving of institutionalized elders with or without dementia? Western Journal of

Nursing Research, 21(4), 473–497.

Family Caregiving 451

Mahoney, D. M., Tarlow, B. J., Jones, R. N., Tennstedt, S., & Kasten, L. (2001). Factors af-

fecting the use of a telephone-based intervention for caregivers of people with

Alzheimer’s disease. Journal of Telemedicine and Telecare, 7(3), 139–148.

Maslow, K., Levine, C., & Reinhard, C. (September, 2005). Assessment of family care-

givers: A public policy perspective. Paper presented at the Family Caregiver Alliance,

San Francisco.

Matire, M., Parris-Stephens, M. A., & Franks, M. M. (1997). Multiple roles of women care-

givers: Feelings of mastery and self-esteem as predictors of psychosocial well-being.

Journal of Women and Aging, 9(1/2), 117–132.

Matthews, S. H. (1995). Gender and the division of filial responsibility between lone sis-

ters and their brothers. Journals of Gerontology: Psychological and Social Sciences, 50B,

S312–S320.

McKinlay, J. B., Crawford, S. L., & Tennstedt, S. L. (1995). The everyday impacts of provid-

ing informal care to dependent elders and their consequences for the care recipients.

Journal of Aging and Health, 7, 4.

Merrill, D. (1997). Caring for elderly parents: Juggling work, family, and caregiving in middle

and working class families. Westport, CT: Auburn House.

Meuser, T. M., & Marwit, S. J. (2001). A comprehensive, stage-sensitive model of grief in

dementia caregiving. Gerontologist, 41(5), 658–670.

Miller, B., & Cafasso, L. (1992). Gender differences in caregiving: Fact or artifact? Geron-

tologist, 32, 498–507.

Miller, B., & Lawton, P. (1997). Introduction: Finding balance in caregiver research.

Gerontologist, 37, 216–217.

Miller, B., McFall, S., & Montgomery, A. (1991). The impact of elder health, caregiver in-

volvement, and global stress on two dimensions of caregiver burden. Journal of Geron-

tology, 46(1), S9–S19.

Mittelman, M. S. (2000). Effect of support and counseling on caregivers of patients with

Alzheimer’s disease. International Psychogeriatrics, 12(1), 341–346.

Mittelman, M. S. (2003). Community caregiving. Alzheimer’s Care Quarterly, 4(4), 273–285.

Mittelman, M. S., Ferris, S. H., Steinberg, G., Shulman, E., Mackell, J. A., Ambinder, A.,

et al. (1993). An intervention that delays institutionalization of Alzheimer’s disease

patients: Treatment of spouse-caregivers. Gerontologist, 33(6), 730–740.

Montgomery, R. J. V. (1988). Respite services for family caregivers. In M. D. Peterson &

D. L. White (Eds.), Health care for the elderly: An information sourcebook (pp. 382–401).

Newbury Park, CA: Sage.

Montgomery, R. J. V. (1989). Investigating caregiver burden. In K. S. Markides & C. L.

Cooper (Eds.), Aging stress and health (pp. 201–218). New York: Wiley.

Montgomery, R. J. V. (1996). Examining respite care: Promises and limitations. In R. Kane

& J. Dobrof Penrod (Eds.), Family caregiving in a caring society: Policy perceptions

(pp. 29–45). Thousand Oaks, CA: Sage.

Montgomery, R. J. V. (1999). The family role in the context of long-term care. Journal of

Aging and Health, 11(3), 401–434.

Montgomery, R. J. V. (2002). A new look at community based respite programs: Utilization, sat-

isfaction, and development. New York: Haworth Press.

Montgomery, R. J. V. (2005). Findings from care manager focus groups conducted in Wisconsin,

Michigan, Washington, and Florida. Unpublished manuscript, University of Wisconsin,

Milwaukee.

Montgomery, R. J., & Datwyler, M. M. (1990). Women and men in the caregiving role. Gen-

erations: Journal of the American Society on Aging, 14(3), 34–38.

452 E

VIDENCE

-B

ASED

AMILY AND

OMMUNITY

RACTICE

Montgomery, R. J. V., & Kamo, Y. (1989). Parent care by sons and daughters. In J. A.

Mancini (Ed.), Aging parents and adult children (pp. 213–230). Lexington, MA: Lexington

Books.

Montgomery, R. J. V., & Kosloski, K. (1994). A longitudinal analysis of nursing home

placement for dependent elders cared for by spouses versus adult children. Journal of

Gerontology: Social Studies, 49(2), S62–S74.

Montgomery, R. J. V., & Kosloski, K. (1995). Respite revisited: Re-assessing the impact. In

P. R. Katz, R. Kane, & M. D. Mezey (Eds.), Quality care in geriatric settings. New York:

Springer.

Montgomery, R. J. V., & Kosloski, K. (2000). Family caregiving: Change, continuity, and

diversity. In R. Rubinstein & M. Lawton (Eds.), Alzheimer’s disease and related dementias:

Strategies in care and research (pp. 143–171). New York: Springer.

Montgomery, R. J. V., & Kosloski, K. (2001). Change, continuity, and diversity among care-

givers (Selected Issue Briefs). Milwaukee: University of Wisconsin, NFCSP.

Montgomery, R. J. V., & Kosloski, K. (in press). Pathways to a caregiver identity for older

adults. In R. C. Talley & R. J. V. Montgomery (Eds.), Caregiving across the life span. New

York: Oxford University Press.

Montgomery, R. J. V., Marquis, J., Schaefer, J., & Kosloski, K. D. (2002). Profiles of respite

use. In R. J. V. Montgomery (Ed.), A new look at community-based respite programs

(pp. 33–64). New York: Haworth Press.

Montgomery, R. J. V., & Rowe, J. M. (2003). Care manager focus groups. Savannah and At-

lanta, GA.

Montgomery, R. J. V., & Williams, K. N. (2001). Implications of differential impacts of

caregiving for future research on Alzheimer care. Aging and Mental Health, 5(Suppl. 1),

S23–S34.

Montoro-Rodriguez, J., Kosloski, K., & Montgomery, R. J. V. (2003). Evaluating a practice-

oriented service model to increase the use of respite services among minorities and

rural caregivers. Gerontologist, 43(6), 916–924.

Noonan, A. E., Tennstedt, S. L., & Rebelsky, F. G. (1996). Making the best of it: Themes

of meaning among informal caregivers to elderly. Journal of Aging Studies, 10,

313–327.

O’Connor, D. L. (2002). Toward empowerment: Revisioning family support groups. Social

Work with Groups, 25, 37.

Ory, M., Yee, J. L., Tennstedt, S. L., & Schulz, R. (2002). The extent and impact of demen-

tia care: Unique challenges experienced by family caregivers. In R. Schulz (Ed.), Hand-

book on dementia caregiving. New York: Springer.

Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress

process: An overview of concepts and their measures. Gerontologist, 30(5), 583–594.

Pearlin, L. I., Turner, H., & Semple, S. (1989). Coping and the mediation of caregiver

stress. In E. Light & B. D. Lebowitz (Eds.), Alzheimer’s disease treatment and family stress:

Directions for research (pp. 198–217). Rockville, MD: U.S. Department of Health and

Human Services.

Penrod, J. D., Kane, R. A., Kane, R. L., & Finch, M. D. (1995). Who cares? The size, scope,

and composition of the caregiver support system. Gerontologist, 35(4), 489–498.

Picot, S. J., Debanne, S. M., Namazi, K. H., & Wykle, M. L. (1997). Religiosity and per-

ceived rewards of Black and White caregivers. The Gerontologist, 37(1), 89–101.

Pillemer, K., Suitor, J., & Wethington, E. (2003). Integrating theory, basic research, and in-

tervention: Two case studies from caregiving research [Special issue]. Gerontologist,

43(1), 19–28.

Family Caregiving 453

Pinquart, M., & Sorensen, S. (2003). Associations of stressors and uplifts of caregiving

with caregiver burden and depressive mood: A meta-analysis. Journals of Gerontology:

Psychological and Social Sciences, 58B(2), P112–P128.

Pinquart, M., & Sorensen, S. (2005). Ethnic differences in stressors, resources, and psy-

chological outcomes of family caregiving: A meta-analysis. Gerontologist, 45(1), 90–106.

Pinquart, M., & Sorensen, S. (2006). Gender differences in caregiver stressors, social re-

sources, and health: An updated meta-analysis. Journals of Gerontology: Psychological

and Social Sciences, 61B(1), P33–P45.

Pyke, K. D., & Bengston, V. L. (1996). Caring more or less: Individualistic and collectivist

systems of family eldercare. Journal of Marriage and the Family, 58(2), 379–393.

Quayhagen, M. P., Quayhagen, M., Corbeil, R. R., Hendrix, R. C., Jackson, J. E., Snyder, L.,

et al. (2000). Coping with dementia: Evaluation of four non pharmacologic interven-

tions. International Psychogeriatrics, 12(2), 249–265.

Schulz, R., Gallagher-Thompson, D., Haley, W. E., & Czaja, S. J. (2000). Understanding the

interventions process: A theoretical/conceptual framework for intervention ap-

proaches to caregiving. In R. Schulz (Ed.), Handbook on dementia caregiving: Evidence-

based interventions for family caregivers (pp. 33–60). New York: Springer.

Schulz, R., Newsom, J., Mittlelmark, M., Burton, L., Hirssch, C., & Jackson, S. (1997).

Health effects of caregiving: The Caregiver Health Effects Study—An ancillary study

of the Cardiovascular Health Study. Annals of Behavioral Medicine, 19(2), 110–116.

Schulz, R., O’Brien, A., Boodwasa, J., & Fleissner, K. (1995). Psychiatric and physical mor-

bidity effects of dementia caregiving: Prevalence, correlates, and causes. Gerontologist,

35(6), 771–779.

Schulz, R., O’Brien, A., Czaja, S., Ory, M., Norris, R., N., Martire, L. M., et al. (2002). De-

mentia caregiver intervention research: In search of clinical significance. Gerontologist,

42, 589–602.

Sherrell, K., Buckwalter, K. C., & Morhardt, D. (2001). Negotiating family relationships:

Dementia care as a midlife developmental task. Families in Society: The Journal of Con-

temporary Human Services, 383–392.

Skaff, M. M., & Pearlin, L. I. (1992). Caregiving: Role engulfment and the loss of self.

Gerontologist, 32(5), 656A–664A.

Sleath, B., Thorpe, J., Landerman, L. R., Doyle, M., & Clipp, E. (2005). African-American

and White caregivers of older adults with dementia: Differences in depressive symp-

tomatology and psychotropic drug use. Journal of the American Geriatrics Society, 53(3),

397–404.

Sorensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with

caregivers? An updated meta-analysis. Gerontologist, 42(3), 356–372.

Spillman, B. C., & Pezzin, L. E. (2000). Potential and active family caregivers: Changing

networks and the “sandwich generation.” Millbank Quarterly, 78(3), 347–374.

Stephens, M. A. P., Townsend, A. L., Martire, L. M., & Druley, J. A. (2001). Balancing par-

ent care with other roles: Interrole conflict of adult daughter caregivers. Journals of

Gerontology: Psychological Sciences and Social Sciences, 56B(1), P24–P34.

Stern, S. (1996). Measuring child work and residence adjustments to parents’ long-term

care needs. Gerontologist, 36, 76–87.

Stuart, M., & Boll Hansen, E. (in press). Danish home care policy and the family: Implica-

tions for the United States. International view on family and aging policy [Special

issue]. Journal of Aging and Social Policy, 18(3/4).

Stueve, A., & O’Donnell, L. (1989). Interactions between women and their elderly par-

ents: Constraints of daughters’ employment. Research on Aging, 11, 331–353.

454 E

VIDENCE

-B

ASED

AMILY AND

OMMUNITY

RACTICE

Toseland, R. W., McCallion, P., Smith, T., Huck, S., Bourgeois, P., & Garstka, T. A. (2001).

Health education groups for caregivers in an HMO. Journal of Clinical Psychology, 57(4),

551–570.

Townsend, D., & Kosloski, K. (2002). Factors related to client satisfaction with community-

based respite services. Home Health Care Services Quarterly, 21(3/4), 89–106.

Van den Heuvel, E. T. P., Witte, L. P., Schure, L. M., Sanderman, R., & Meyboom-de Jong,

B. (2001). Risk factors for burn-out in caregivers of stroke patients, and possibilities

for intervention. Clinical Rehabilitation, 15(6), 669–677.

Van den Heuvel, E. T. P., Witte, L. P., Stewart, R. E., Schure, L. M., Sanderman, R., &

Meyboom-de Jong, B. (2002). Long-term effects of a group support program and an in-

dividual support program for informal caregivers of stroke patients: Which care-

givers benefit the most? Patient Education and Counseling, 47(4), 291–299.

Vitaliano, P. P., Echeverria, D., Yi, J., Phillips, P. E. M., Young, H., & Siegler, I. C. (2005).

Psychophysiological mediators of caregiver stress and differential cognitive decline.

Psychology and Aging, 20(3), 402–411.

Vitaliano, P. P., Young, H. M., & Zhang, J. (2004). Is caregiving a risk factor for illness?

Current Directions in Psychological Science, 13(1), 13–16.

Warren, S., Kerr, J. R., Smith, D., Godkin, D., & Schalm, C. (2003). The impact of adult day

programs on family caregivers of elderly relatives. Journal of Community Health Nursing,

20, 209–221.

Winslow, B. C. P. (1999). Patterns of burden in wives who care for husbands with demen-

tia. Nursing Clinics of North America, 34(2), 275–287.

Wykle, M. L. (1994). Physical and mental health of women caregivers of older adults. Jour-

nal of Gerontological Nursing, 20(3), 48–49.

Yates, M. E., Tennstedt, S., & Chang, B. (1999). Contributors to and mediators of psycho-

logical well-being for informal caregivers. Journals of Gerontology: Psychological and So-

cial Sciences, 54B(1), 12–22.

Yee, J. L., & Schulz, R. (2000). Gender differences in psychiatric morbidity among family

caregivers: A review and analysis. Gerontologist, 40, 147–164.

Yin, T., Zhou, Q., & Bashford, C. (2002). Burden on family members: Caring for frail el-

derly—A meta-analysis of interventions. Nursing Research, 51(3), 199–208.

Youn, G., Knight, B. G., Jeong, H.-S., & Benton, D. (1999). Differences in familism values

and caregiving outcomes among Korean, Korean American, and White American de-

mentia caregivers. Psychology and Aging, 14(3), 355–364.

455

CHAPTER 17

Community- and

Facility-Based Care

GRETCHEN E. ALKEMA, KATHLEEN H. WILBER,

and SUSAN M. ENGUIDANOS

HIS CHAPTER FOCUSES

on a range of programs and services developed for

older adults who need chronic care services. Types of support available in-

clude both community-based and facility-based care. These services are de-

signed to offer therapeutic, compensatory, and palliative care for older adults

with multiple chronic health conditions and functional limitations.

Our goal in this chapter is twofold: (1) to provide a general conceptual

overview of the need for chronic care and its historical interface with community-

based and facility-based services, and (2) to review what is known about several

specific types of community- and facility-based services. We focus on services

that link medical and social care such as skilled nursing facilities, assisted living

facilities, adult day services, and hospice. We begin the chapter by presenting

the core values that we believe affect a broad variety of chronic care services,

and then develop categories of services according to their settings and purpose.

We discuss the prevalence of major chronic care conditions and the etiology of

chronic care. We then present research findings on some of the prominent

types of services within the chronic care continuum. We conclude by applying

evidence-based practices to a case study and discuss practice implications and

policy recommendations.

It is important to clarify from the outset that these are challenging goals. For

most chronic care services, there is no national policy or regulations, which

means that there is a great deal of state and local variation. In addition, chronic

care service delivery networks are developing rapidly, changing and evolving to

meet emerging needs within shifting fiscal and policy constraints. Robyn Stone

(2000, p. 2), a prominent gerontologist, notes that the broad area of long-term care

is increasingly complex and “not easy to define [because] the boundaries among

primary, acute, and long-term care have blurred.” We agree.