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

Overview

Journal Am J Alzheimers Dis Other Demen

Publisher Sage Publications

Specialty Neurology

Date 2006 Sep 5

PMID 16948286

Citations 15

Authors

Perry Edelman

Daniel Kuhn

Bradley R Fulton

Gregory A Kyrouac

Affiliations

Soon will be listed here.

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.

Citing Articles

Finding the Value: Identifying the Key Elements of Recorded Clinic Visits From the Perspective of Patients, Clinicians, and Caregivers.

Barr P, Wasp G, Dannenberg M, Mistler L, Verma K, Bonasia K Health Expect. 2025; 28(1):e70143.

PMID: 39776090 PMC: 11708869. DOI: 10.1111/hex.70143.

Profile of Caregiving Activities and Association With Physical Health Among Dementia Spousal Caregivers.

Cho J, Sands L, Stevens A, Allore H, Horstman M Innov Aging. 2024; 8(3):igae017.

PMID: 38524243 PMC: 10960627. DOI: 10.1093/geroni/igae017.

Investigating the Readability and Linguistic, Psychological, and Emotional Characteristics of Digital Dementia Information Written in the English Language: Multitrait-Multimethod Text Analysis.

Engineer M, Kot S, Dixon E JMIR Form Res. 2023; 7:e48143.

PMID: 37878351 PMC: 10632922. DOI: 10.2196/48143.

The Human Need for Equilibrium: Qualitative Study on the Ingenuity, Technical Competency, and Changing Strategies of People With Dementia Seeking Health Information.

Dixon E, Anderson J, Blackwelder D, Radnofsky M, Lazar A J Med Internet Res. 2022; 24(8):e35072.

PMID: 35969426 PMC: 9412905. DOI: 10.2196/35072.

Barriers to Online Dementia Information and Mitigation.

Dixon E, Anderson J, Blackwelder D, Radnofsky M, Lazar A Proc SIGCHI Conf Hum Factor Comput Syst. 2022; 2022.

PMID: 35789135 PMC: 9201622. DOI: 10.1145/3491102.3517554.

References

Kosloski K, Schaefer J, Allwardt D, Montgomery R, Karner T . The role of cultural factors on clients' attitudes toward caregiving, perceptions of service delivery, and service utilization. Home Health Care Serv Q. 2003; 21(3-4):65-88. DOI: 10.1300/J027v21n03_04. View

Snyder L, Quayhagen M, Shepherd S, Bower D . Supportive seminar groups: an intervention for early stage dementia patients. Gerontologist. 1995; 35(5):691-5. DOI: 10.1093/geront/35.5.691. View

Teel C . Rural practitioners' experiences in dementia diagnosis and treatment. Aging Ment Health. 2004; 8(5):422-9. DOI: 10.1080/13607860410001725018. View

Hebert L, Scherr P, Bienias J, Bennett D, Evans D . Alzheimer disease in the US population: prevalence estimates using the 2000 census. Arch Neurol. 2003; 60(8):1119-22. DOI: 10.1001/archneur.60.8.1119. View

Morgan D, Semchuk K, Stewart N, DArcy C . Rural families caring for a relative with dementia: barriers to use of formal services. Soc Sci Med. 2002; 55(7):1129-42. DOI: 10.1016/s0277-9536(01)00255-6. View

Fortinsky R, Hathaway T . Information and service needs among active and former family caregivers of persons with Alzheimer's disease. Gerontologist. 1990; 30(5):604-9. DOI: 10.1093/geront/30.5.604. View

Eloniemi-Sulkava U, Notkola I, Hamalainen K, Rahkonen T, Viramo P, Hentinen M . Spouse caregivers' perceptions of influence of dementia on marriage. Int Psychogeriatr. 2002; 14(1):47-58. DOI: 10.1017/s104161020200827x. View

Feinberg L, Whitlatch C . Are persons with cognitive impairment able to state consistent choices?. Gerontologist. 2001; 41(3):374-82. DOI: 10.1093/geront/41.3.374. View

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. View

10.

McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan E . 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(7):939-44. DOI: 10.1212/wnl.34.7.939. View

11.

Ricketts T, HART L, Pirani M . How many rural doctors do we have?. J Rural Health. 2000; 16(3):198-207. DOI: 10.1111/j.1748-0361.2000.tb00457.x. View

12.

Holroyd S, Turnbull Q, Wolf A . What are patients and their families told about the diagnosis of dementia? Results of a family survey. Int J Geriatr Psychiatry. 2002; 17(3):218-21. DOI: 10.1002/gps.552. View

13.

Skaff M, Pearlin L, Mullan J . Transitions in the caregiving career: effects on sense of mastery. Psychol Aging. 1996; 11(2):247-57. DOI: 10.1037//0882-7974.11.2.247. View

14.

Keefover R, Rankin E, Keyl P, Wells J, Martin J, Shaw J . Dementing illnesses in rural populations: the need for research and challenges confronting investigators. J Rural Health. 1996; 12(3):178-87. DOI: 10.1111/j.1748-0361.1996.tb00792.x. View

15.

Folstein M, Folstein S, McHugh P . "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975; 12(3):189-98. DOI: 10.1016/0022-3956(75)90026-6. View

16.

Wackerbarth S, Johnson M . Essential information and support needs of family caregivers. Patient Educ Couns. 2002; 47(2):95-100. DOI: 10.1016/s0738-3991(01)00194-x. View

17.

Logsdon R, Gibbons L, McCurry S, Teri L . Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002; 64(3):510-9. DOI: 10.1097/00006842-200205000-00016. View

18.

Friss Feinberg L, Whitlatch C . Decision-making for persons with cognitive impairment and their family caregivers. Am J Alzheimers Dis Other Demen. 2002; 17(4):237-44. PMC: 10833881. DOI: 10.1177/153331750201700406. View

19.

Hubbard G, Downs M, Tester S . Including older people with dementia in research: challenges and strategies. Aging Ment Health. 2003; 7(5):351-62. DOI: 10.1080/1360786031000150685. View

20.

Burton L, Zdaniuk B, Schulz R, Jackson S, Hirsch C . Transitions in spousal caregiving. Gerontologist. 2003; 43(2):230-41. DOI: 10.1093/geront/43.2.230. View