How to Explore the Needs of Informal Caregivers of Individuals with Cognitive Impairment in Alzheimer's Disease or Related Diseases? A Systematic Review of Quantitative and Qualitative Studies

Overview

Journal BMC Geriatr

Publisher Biomed Central

Specialty Geriatrics

Date 2017 Apr 19

PMID 28415968

Citations 21

Authors

T Novais

V Dauphinot

P Krolak-Salmon

C Mouchoux

Affiliations

Soon will be listed here.

Abstract

Background: This study aims to review the methodologies used to identify the needs, the existing needs assessment instruments and the main topics of needs explored among caregivers of patients with mild cognitive impairment to dementia.

Methods: MEDLINE, PsycINFO, The Cochrane Library and Web of science were searched from January 1980 to January 2017. Research studies in English or French were eligible for inclusion if they fulfilled the following criteria: quantitative, qualitative and mixed method studies that used instrument, focus group or semi-structured interviews to assess the informal caregiver's needs in terms of information, coping skills, support and service.

Results: Seventy studies (n = 39 quantitative studies, n = 25 qualitative studies and n = 6 mixed method studies) met the inclusion criteria and were included. Thirty-six quantitative instruments were identified but only one has been validated for the needs assessment of dementia caregivers: the Carer's Needs Assessment for Dementia (CNA-D). The main areas of needs explored in these instruments were: information, psychosocial, social, psychoeducational and other needs.

Conclusions: No instrument has been developed and validated to assess the needs of informal caregivers of patients with cognitive impairment, whatever the stage and the etiology of the disease. As the perceived needs of caregivers may evolve with the progression of the disease and the dementia transition, their needs should be regularly assessed.

Citing Articles

Programmes Addressed to Informal Caregivers' Needs: A Systematic Literature Review.

Gemito L, Alves E, Moreira J, Marques M, Caldeira E, Ferreira R Geriatrics (Basel). 2024; 9(3).

PMID: 38920427 PMC: 11202834. DOI: 10.3390/geriatrics9030071.

Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township.

Mahomed A, Pretorius C Dementia (London). 2024; 23(4):622-642.

PMID: 38354041 PMC: 11059838. DOI: 10.1177/14713012241234155.

Mental health impact of the COVID-19 pandemic on patients with neurodegenerative diseases and perceived family caregiver burden in Lima, Peru.

Diaz M, Bailey M, Garcia B, Aguilar X, Sanchez D Brain Behav. 2024; 14(1):e3361.

PMID: 38236201 PMC: 10761328. DOI: 10.1002/brb3.3361.

Reply to: "Unmet supportive care needs among informal caregivers of patients with head and neck cancer in the first 2 years after diagnosis and treatment".

Kajiwara K, Kako J, Kobayashi M, Yamashita T, Yamanaka M Support Care Cancer. 2023; 31(6):359.

PMID: 37247077 DOI: 10.1007/s00520-023-07834-z.

Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan.

Takechi H, Hara N, Eguchi K, Inomata S, Okura Y, Shibuya M Int J Environ Res Public Health. 2023; 20(6).

PMID: 36981952 PMC: 10049111. DOI: 10.3390/ijerph20065044.

References

Millenaar J, van Vliet D, Bakker C, Vernooij-Dassen M, Koopmans R, Verhey F . The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study. Int Psychogeriatr. 2013; 26(12):2001-10. DOI: 10.1017/S1041610213001890. View

Vaingankar J, Subramaniam M, Picco L, Eng G, Shafie S, Sambasivam R . Perceived unmet needs of informal caregivers of people with dementia in Singapore. Int Psychogeriatr. 2013; 25(10):1605-19. DOI: 10.1017/S1041610213001051. View

Li H . Unmet service needs: a comparison between dementia and non-dementia caregivers. Home Health Care Serv Q. 2012; 31(1):41-59. DOI: 10.1080/01621424.2011.641921. View

Brodaty H, Thomson C, Thompson C, Fine M . Why caregivers of people with dementia and memory loss don't use services. Int J Geriatr Psychiatry. 2005; 20(6):537-46. DOI: 10.1002/gps.1322. View

Selwood A, Johnston K, Katona C, Lyketsos C, Livingston G . Systematic review of the effect of psychological interventions on family caregivers of people with dementia. J Affect Disord. 2006; 101(1-3):75-89. DOI: 10.1016/j.jad.2006.10.025. View

Schulz R, Beach S . Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999; 282(23):2215-9. DOI: 10.1001/jama.282.23.2215. View

Aminzadeh F, Byszewski A, Dalziel W, Wilson M, Deane N, Papahariss-Wright S . Effectiveness of outpatient geriatric assessment programs: exploring caregiver needs, goals, and outcomes. J Gerontol Nurs. 2005; 31(12):19-25. DOI: 10.3928/0098-9134-20051201-06. View

Nichols K, Fam D, Cook C, Pearce M, Elliot G, Baago S . When dementia is in the house: needs assessment survey for young caregivers. Can J Neurol Sci. 2012; 40(1):21-8. DOI: 10.1017/s0317167100012907. View

Gauthier S, Reisberg B, Zaudig M, Petersen R, Ritchie K, Broich K . Mild cognitive impairment. Lancet. 2006; 367(9518):1262-70. DOI: 10.1016/S0140-6736(06)68542-5. View

10.

Wawrziczny E, Pasquier F, Ducharme F, Kergoat M, Antoine P . Do spouse caregivers of young and older persons with dementia have different needs? A comparative study. Psychogeriatrics. 2017; 17(5):282-291. DOI: 10.1111/psyg.12234. View

11.

Zarit S, Reever K . Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980; 20(6):649-55. DOI: 10.1093/geront/20.6.649. View

12.

Moher D, Liberati A, Tetzlaff J, Altman D . Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. J Clin Epidemiol. 2009; 62(10):1006-12. DOI: 10.1016/j.jclinepi.2009.06.005. View

13.

van der Roest H, Meiland F, Van Hout H, Jonker C, Droes R . Validity and reliability of the Dutch version of the Camberwell Assessment of Need for the Elderly in community-dwelling people with dementia. Int Psychogeriatr. 2008; 20(6):1273-90. DOI: 10.1017/S1041610208007400. View

14.

Pope C, Ziebland S, Mays N . Qualitative research in health care. Analysing qualitative data. BMJ. 2000; 320(7227):114-6. PMC: 1117368. DOI: 10.1136/bmj.320.7227.114. View

15.

Philp I, McKee K, MELDRUM P, Ballinger B, Gilhooly M, Gordon D . Community care for demented and non-demented elderly people: a comparison study of financial burden, service use, and unmet needs in family supporters. BMJ. 1995; 310(6993):1503-6. PMC: 2549880. DOI: 10.1136/bmj.310.6993.1503. View

16.

Sadak T, Korpak A, Borson S . Measuring caregiver activation for health care: Validation of PBH-LCI:D. Geriatr Nurs. 2015; 36(4):284-92. DOI: 10.1016/j.gerinurse.2015.03.003. View

17.

van der Roest H, Meiland F, Comijs H, Derksen E, Jansen A, Van Hout H . What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. Int Psychogeriatr. 2009; 21(5):949-65. DOI: 10.1017/S1041610209990147. View

18.

Ryan K, Weldon A, Huby N, Persad C, Bhaumik A, Heidebrink J . Caregiver support service needs for patients with mild cognitive impairment and Alzheimer disease. Alzheimer Dis Assoc Disord. 2009; 24(2):171-6. PMC: 2877755. DOI: 10.1097/WAD.0b013e3181aba90d. View

19.

Killen A, Flynn D, De Brun A, OBrien N, OBrien J, Thomas A . Support and information needs following a diagnosis of dementia with Lewy bodies. Int Psychogeriatr. 2015; 28(3):495-501. DOI: 10.1017/S1041610215001362. View

20.

McKee K, Spazzafumo L, Nolan M, Wojszel B, Lamura G, Bien B . Components of the difficulties, satisfactions and management strategies of carers of older people: a principal component analysis of CADI-CASI-CAMI. Aging Ment Health. 2009; 13(2):255-64. DOI: 10.1080/13607860802342219. View