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American Journal of Alzheimer's Disease and Other Dementias logoLink to American Journal of Alzheimer's Disease and Other Dementias
. 2006 Aug-Sep;21(4):226–233. doi: 10.1177/1533317506290664

Information and Service Needs of Persons With Alzheimer's Disease and Their Family Caregivers Living in Rural Communities

Perry Edelman 1, Daniel Kuhn, Bradley R Fulton, Gregory A Kyrouac
PMCID: PMC10833300  PMID: 16948286

Abstract

This study aimed to identify the information and service needs of persons with Alzheimer's disease (AD) and their family caregivers living in rural communities and to assess differences and similarities in each partner's perspective. In an outpatient clinic setting, a self-report survey was completed by 100 caregivers, while a similar survey was used to interview 100 persons with mild to moderate AD. The survey assessed respondents' interest in information or services related to 22 topics about AD and various aspects of coping with the disease. Although more caregivers than persons with AD reported interest in each topic, 8 of the top 10 topics endorsed by each group of respondents were the same. However, analysis of responses by dyads revealed substantial disagreement in terms of each partner's interest in information and services. Patient and family education, as well as referrals for services, must take into account each partner's unique perspective and needs.

Keywords: Alzheimer's disease, information and service needs, persons with dementia, family caregivers, rural communities

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References

  1. US Census Bureau. (2000). United States Census 2000. Available at: http://www.census.gov/main/www/cen2000.html. Accessed January 16, 2006. [Google Scholar]
  2. US Census Bureau. Census 2000 urban and rural classification, 2002. Available at: http://www.census.gov/geo/www/ua/ua_2k.html. Retrieved January 16, 2006. [Google Scholar]
  3. Ricketts TC, Hary LG, Pirani M. How many rural doctors do we have? J Rural Health. 2000;16:198-207. [DOI] [PubMed] [Google Scholar]
  4. Gamm L, Hutchison L, Dabney B, Dorsey A, eds. Healthy People 2010: A Companion Document for Rural Areas, Volume 2. Available at: http://www.srph.tamushsc.edu/rhp2010/. Accessed January 16, 2006. [Google Scholar]
  5. Keefover RW, Rankin ED, Keyl PM, Wells JC, Martin J, Shaw J. Dementing illnesses in rural populations: the need for research and challenges confronting investigators. J Rural Health. 1996;12:178-187. [DOI] [PubMed] [Google Scholar]
  6. Hebert LE, Scherr PA, Bienias JL, Bennett DA, Evans DA. Alzheimer disease in the US population: prevalence estimates using the 2000 census. Arch Neurol. 2003;60: 1119-1122. [DOI] [PubMed] [Google Scholar]
  7. Bedard M, Koivuranta A, Stuckey A. Health impact on caregivers of providing informal care to a cognitively impaired older adult: rural versus urban settings. Can J Rural Med. 2004;9(1):15-23. [PubMed] [Google Scholar]
  8. Kosloski K, Schaefer JP, Allwardt D, Montgomery RJ, Karner TX. The role of cultural factors on clients' attitudes toward caregiving, perceptions of service delivery, and service utilization. Home Health Care Serv Q. 2002;21(3-4):65-88. [DOI] [PubMed] [Google Scholar]
  9. Morgan DG, Semchuk KM, Stewart NJ, D'Arcy C. Rural families caring for a relative with dementia: barriers to use of formal services. Soc Sci Med. 2002;55:1129-1142. [DOI] [PubMed] [Google Scholar]
  10. Fortinsky RH, Hathaway TJ. Information and service needs among active and former family caregivers of persons with Alzheimer's disease. Gerontologist. 1990;30: 604-609. [DOI] [PubMed] [Google Scholar]
  11. Bowd AD, Loos CH. Needs, morale and coping strategies of caregivers for persons with Alzheimer's disease in isolated communities in Canada.Am J Alzheimer Dis. 1996;11(3):32-39. [Google Scholar]
  12. Beisecker AE, Kasal Chrisman S, Wright, LJ. Perceptions of family caregivers of persons with Alzheimer's disease: communication with physicians. Am J Alzheimer Dis. 1997;12(2):73-83. [Google Scholar]
  13. Wackerbarth SB, Johnson MM. Essential information and support needs of family caregivers. Patient Educ Couns. 2002;47:95-100. [DOI] [PubMed] [Google Scholar]
  14. Feinberg LF, Whitlatch CJ. Are persons with cognitive impairment able to state consistent choices? Gerontologist. 2001;41:374-382. [DOI] [PubMed] [Google Scholar]
  15. Harris P, ed. The Person With Alzheimer's: Pathways to Understanding the Experience. Baltimore, Md: Johns Hopkins University Press; 2002. [Google Scholar]
  16. Hubbard G, Downs MG, Tester S. Including older people with dementia in research: challenges and strategies. Aging Ment Health. 2003;7:351-362. [DOI] [PubMed] [Google Scholar]
  17. McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurology. 1984;34:939-944. [DOI] [PubMed] [Google Scholar]
  18. Folstein MF, Folstein SE, McHugh PR. “Mini-Mental State”: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12: 189-198. [DOI] [PubMed] [Google Scholar]
  19. Whitlatch CJ, Fienberg LF, Tucker S. Accuracy and consistency of responses from persons with cognitive impairment. Dementia. 2005;4:171-184. [Google Scholar]
  20. Logsdon RG, Gibbons LE, McCurry SM, Terri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64:510-519. [DOI] [PubMed] [Google Scholar]
  21. Kuhn D. Caring for relatives with early stage Alzheimer's disease: an exploratory study. Am J Alzheimer Dis. 1998;13(4):189-196. [Google Scholar]
  22. SPSS. Statistical Package for the Social Sciences [computer program]. Version 11.5. Chicago Ill:, SPSS; 2002. [Google Scholar]
  23. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64:510-519. [DOI] [PubMed] [Google Scholar]
  24. Feinberg LF, Whitlatch CJ. Decision-making for persons with cognitive impairment and their family caregivers. Am J Alzheimer Dis Other Demen.2002;17:237-244. [DOI] [PMC free article] [PubMed] [Google Scholar]
  25. Cummings SM. Efficacy of a group treatment model in helping spouses meet the emotional and practical challenges of early stage caregiving. Clin Gerontol. 1998;20: 29-45. [Google Scholar]
  26. Snyder L, Quayhagen MP, Shepherd S, Bower D. Supportive seminar groups: an intervention of early stage dementia patients. Gerontologist. 1995;35:691-695. [DOI] [PubMed] [Google Scholar]
  27. Yale R. Developing Support Groups for Individuals With Early-Stage Alzheimer's Disease. Baltimore, Md: Health Professions Press; 1995. [Google Scholar]
  28. Teel CS. Rural practitioners' experiences in dementia diagnosis and treatment. Aging Ment Health. 2004;8: 422-429. [DOI] [PubMed] [Google Scholar]
  29. Kuhn DR. The changing face of sexual intimacy in Alzheimer's disease. Am J Alzheimer Care Res. 1994;9(5):7-14. [Google Scholar]
  30. Wright LK. Affection and sexuality in the presence of Alzheimer's disease: a longitudinal study. Sex Disab. 1998;16:167-179. [Google Scholar]
  31. Eloniemi-Sulkava U, Notkola IL, Hamalainen K, et al. Spouse caregivers' perceptions of influence of dementia on marriage. Int Psychogeriatr. 2002;14(1): 47-58. [DOI] [PubMed] [Google Scholar]
  32. Holroyd S, Turnbull Q, Wolf AM. What are patients and their families told about the diagnosis of dementia? Results of a family survey. Int J Geriatr Psychiatry. 2002;17:218-221. [DOI] [PubMed] [Google Scholar]
  33. Alzheimer's Association. Alzheimer's Disease Report: Communication Gaps Between Primary Care Physicians and Caregivers. Available at: http://www.alz.org/media/newsreleases/2001/060601alzsurvey.asp. Accessed January 16, 2006. [Google Scholar]
  34. Montgomery RJV, Kosloski KD. Family caregiving: change, continuity and diversity. In: Lawton P, Rubenstein R, eds. Interventions in Dementia Care. New York NY:, Springer; 2000:89-106. [Google Scholar]
  35. Burton LC, Zdaniuk B, Schulz R, Jackson S, Hirsch C. Transitions in spousal caregiving. Gerontologist. 2003; 43:230-241. [DOI] [PubMed] [Google Scholar]
  36. Skaff MM, Pearlin LI, Mullan JT Transitions in the caregiving career: effects on sense of mastery.Psychol Aging. 1996;11:247-257. [DOI] [PubMed] [Google Scholar]

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