Table 1 Methodological characteristics of the included quantitative studies
Setting (Year / country) | Authors | CG sample | Needs assessment methods of the quantitative studies | |||||
|---|---|---|---|---|---|---|---|---|
Administration | Aim of the instrument | Domains - scale | Specific cognitive impairment | validated instrument | Recipient | |||
1) In Mild Cognitive Impairment (MCI) | ||||||||
MCI and AD | ||||||||
2010/USA [21] | Ryan et al. | 80 informal CGs (25 MCI and 55 AD); 68.8% female; 75% spouse; mean age = 64.1 years | Self-administered | Support and service needs | List of 18 services: medical, social and community, mental health, and other. Three-point rating scale. | yes | No, questionnaire developed for the study | CG |
MCI and dementia | ||||||||
2005/ Canada [37] | Aminzadeh et al. | 141 informal CGs; 61.7% female; mean age = 60.1 years | Self-administered | CG’s needs, goals and outcomes | List of educational, support and care management needs (11 items). | yes | No, questionnaire developed for the study | CG |
2011/USA [38] | Johnston et al. | 15 CGS (8 dementia, 7 MCI) | By telephone | Patient’s and CG’s needs | 15 care recipient need domains (77 items) and 4 CGs need domains (12 items): safety, management of cognitive and noncognitive symptoms, medical comorbidities, daily activities, CG education and support needs. Three-point rating scale. | yes | Yes - The Johns Hopkins Dementia Care Needs Assessment. Psychometric properties not formally tested / concurrent validity with QOL measures [39]. | CG + patients |
2) In Alzheimer’s Disease and Related Disorders (ADRD) | ||||||||
2002/USA [40] | Wackerbarth et al. | 128 informal CGs; 74.6% female; 34.7% spouse; mean age = 78.5 years | Self-administered | Information and support needs | Needs assessment surveys based on the results of 28 previously conducted in-depth interviews with CGs. Three sections: 20 information needs, 19 support needs and information about the caregiving experience. Four-point rating scale. | yes | No, questionnaire developed for the study | CG |
AD | ||||||||
1987/ USA [41] | Simonton | No participant | Self-administered | Information needs | 15 questions with a five-point rating scale. | yes | No, questionnaire developed for the study | CG |
1990/USA [42] | Fortinsky et al. | 115 informal CGs (58 active CGs, 57 former CGs); 79.1% female; 47.8% spouse; mean age = 58 years | Self-administered | Information and service needs | Types of information and services desired and how much information was provided to them at the time of diagnosis. | yes | No, questionnaire developed for the study | CG |
1992/USA [43] | Francis et al. | 39 informal CGs; 72% female | By telephone | Service needs | 2 parts: measures functional status on five dimensions (social resources, economic resources, mental health, physical health, and activities of daily living); measures 24 generically defined services received (intensity, provider) as well as perceived need. | No (elderly) | Yes - The Older American Resources and Services Multidimensional Functional Assessment Questionnaire (OMFAQ). Validity and reliability tested in elderly [44]. | CG |
1996/USA [45] | Bowd et al. | 68 informal CGs (living in isolated communities); 73% female; 56% spouse; mean age = 64 years | Self-administered | Support needs | “Assessment of Perceived Needs of CGs»: 27 items (social and informal supports, the use of formal community services). | yes | No, questionnaire developed for the study | CG |
1999/ Italy [19] | Dello Buono et al. | 60 informal CGs; 50.6% female; 50% spouse; mean age = 76.83 years | Face-to-face interviews | service needs | A list of the local services (frequency of use, reason for non-use) and a list of ten interventions (choosing one or more which might be helpful). | No (elderly) | No, questionnaire developed for the study | CG |
2006/USA [46] | Edelman et al. | 100 informal CG living in rural communities; 61% female; 44% spouse; mean age = 61 years | Self-administered | information and service needs | A 22-item Checklist of Interest in Services and Information. Four areas: medical needs (6 items); care needs (5 items); coping needs (6 items); and service needs (3 items). | yes | No, questionnaire developed for the study | CG + patients |
2007/ Finland [47] | Raivio et al. | 1214 informal CGs; 63% female; 100% spouse; mean age = 78.2 years | Self-administered | service needs | 11 areas: support and services received, the CGs’ subjective needs and satisfaction with these services. | No (elderly) | No, questionnaire developed for the study | CG |
2011/ France [48] | Coudin et al. | 74 informal CGs; 62% female; 74% spouse | Self-administered | difficulties, coping strategies and satisfaction | 3 Questionnaires CADI-CAMI-CASI: the Carers Assessment of Difficulties index (30 items) - Managing Index (38 items) - Satisfaction Index (30 items). | No(CG) | Yes - CADI-CAMI-CASI Psychometric properties tested in CG of older people [49]. | CG |
2012/ France [50] | Amieva et al. | 645 informal CGs; 61.1% spouse | Self-administered | CG’s needs | 28-item questionnaire. Four main needs: learning skills to improve daily life management of their relatives (7 items); information on the disease (7 items); improving CGs’ self-confidence (7 items); improving communication (7 items). | No (elderly) | Yes - Echelle d’attentes en matière de consultations (EAC) Psychometric properties tested in CGs of depressed elderly people (Cronbach’s alpha 0.89 to 0.95, intra-class coefficient 0.92) [51]. | CG |
Frontotemporal Dementia (FTD) | ||||||||
2011/ Canada [52] | Chow et al. | 79 informal CGs; 57% female; median age = 58 years | Web-based survey | CG’s needs | 9 questions with multiple choice responses.Areas: diagnosis, symptoms, the troublesome aspects of caregiving, resources/interventions, process of learning about FTD. | yes | No, questionnaire developed for the study | CG |
2013/ Germany [53] | Diehl-Schmid et al. | 94 informal CGs; 72% female; 80% spouse; mean age = 89.11 years | Self-administered | Support and service and intervention needs | List of 45 support services and interventions relating to the following domains: information, psychosocial support for relatives, care outside of home, support at home, financial support, safety issues, therapies for the patients, and raising awareness. CGs were asked to rate the helpfulness of the proposed services and interventions. | yes | No, instrument developed for the study | CG |
AD and FTD | ||||||||
2010 / Australia [54] | Nicolaou et al. | 30 FTD dyads; 93% female94% spouse; mean age = 58.5 years | Face-to-face interviews | Patient’s and CG’s needs | 24 areas and four categories: autonomy; physical needs; psychological, emotional and social needs; and CG’s needs. | No (elderly) | Yes - Camberwell Assessment of Need for the Elderly (CANE) Psychometric properties tested in PWD and CGs of PWD [55]. | CG |
Lewy Body Dementia | ||||||||
2011 / USA [56] | Galvin et al. | 962 CGs; 87,9% female; 40,6% spouse; mean age = 55.9 years | Web-based survey | Functional, behavioral and affective disturbances burden | Areas: ADL, IADL, paid services used and requested services by CGs. | yes | No, questionnaire developed for the study | CG |
2015/UK [57] | Killen et al. | 122 CGs; 89% female; 17.6% spouse | Web-based survey | Information and support needs | Ten short questions focused on past support and information experiences, difficulties encountered that could benefit from information and support, and appropriate topics for inclusion in future resource development. | yes | No, questionnaire developed for the study | CG + patients |
AD and vascular dementia | ||||||||
2001/ USA [58] | England | 92 filial CGs; 72.8% female; mean age = 53.45 years | Face-to-face interviews | Learning and resource needs | Checklist of learning and resource needs: prioritization of a list of 15 information requests and prioritization a list of ten resource requests. | yes | No, questionnaire developed for the study | CG |
3) Early-onset Dementia (EOD) | ||||||||
2012/ Norway [22] | Rosness et al. | 45 informal CGs68.9% female | Self-administered | Burden and needs | A 20-item questionnaire (Care-EOD) assessing the burden and needs. Six-point rating scale. | yes | No, questionnaire developed for the study | CG |
2014/ USA [59] | Gibson et al. | 81 CG; 76.5% female; 69.2% spouse | Web-based survey | Service and support needs | Areas: caregiving obligations, utilization of services, perceived importance of services, employment status, need for and access to financial services and benefits, and perceived understanding of the experiences of CGs by the public and by service providers. | yes | No, survey developed for the study | CG |
4) Dementia | ||||||||
1995/ UK [60] | Philp et al. | 114 informal CGs; 86% female; 22.8% spouse; mean age = 80.7 years | Face-to-face interviews | Service needs | List of locally available services: frequency of use, number of hours of support a week. | yes | No, instrument developed for the study | CG |
1999/ UK [61] | Turner et al. | 30 CGs; 60% female; 37% spouse; 2/3 < 65 years | Face-to-face interviews | Training needs | Four areas (19 items): practical advice, information, coping with caring, coping with the person with dementia. | yes | No, survey developed for the study | CG |
2004/USA [62] | Gaugler et al. | 694 informal CGs (344 community PWD, 144 institutional PWD, 216 deceased PWD); 70.9% female;37.8% spouse; mean age = 61.17 years | Self-administered | Unmet needs | 7 items, 34 questions: help with ADL tasks, help with IADL tasks, dementia symptoms, timing of care, formal support, information and confidante/family support. Yes/no questions. | yes | No, questionnaire developed for the study | CG |
2005/ Austria [16] | Wancata et al. | 45 informal CGs73% female46% spousemean age = 60.9 years | Interview | CG’s needs | 18 problem areas with several possible interventions (+ an optional area for additional problems). Five-point rating scale. | yes | Yes - Carers’ Needs Assessment for Dementia (CNA-D) Psychometric properties tested in CGs of PWD [16]. | CG |
2008/ UK [63] | Orrell et al. | 81 informal CGs | Face-to-face interviews | Patient’s and CG’s needs | 24 areas and four categories: autonomy; physical needs; psychological, emotional and social needs; and CG’s needs. | No (elderly) | Yes - Camberwell Assessment of Need for the Elderly (CANE) Psychometric properties tested in PWD and CGs of PWD [55]. | CG + patients + professionals |
Van der Roest et al.(2 studies) | 322 informal CGs; 68.6% female; 54.3% spouse; mean age = 65.4 years | Face-to-face interviews | Patient’s and CG’s needs | 24 areas and four categories: autonomy; physical needs; psychological, emotional and social needs; and CG’s needs. | No (elderly) | Yes - Camberwell Assessment of Need for the Elderly (CANE) Psychometric properties tested in PWD and CGs of PWD [55]. | CG + patients | |
2009/ UK [64] | Selwood et al. | 113 informal CGs; 67.9% female; 33.9% spouse; mean age = 61.2 | Self-administered | Strategies to reduce abusive behavior | List of 14 strategies which had either helped them already or that they thought would have the potential to help them avoid the abusive behaviors. Rating of the most helpful and the second most helpful strategies. | yes | No, instrument developed for the study | CG |
2008/ USA [65] | Nichols et al. | 165 informal CGs; 78.4% female; 50.3% spouse; mean age = 64.7 years | Selection of a topic to discuss by CG | Behavior, stress and coping pressing concerns | 25 pamphlets addressing particular behaviors and 12 pamphlets on CG stress/coping and improving the CG’s own well-being. | yes | No, instrument developed for the study | CG |
2010/ Netherlands [66] | Peeters et al. | 984 informal CGs; 71.6% female; 50.8% spouse; mean age = 62.8 years | Self-administered | Professional support needs | 2 parts: 14 areas (30 items) on problems that are faced by persons with dementia and problems experienced by CGs; 56 items about the needs for additional professional support. | yes | No, questionnaire developed for the study | CG |
2010/Italy [17] | Rosa et al. | 112 informal CGs; 69% female; mean age = 55 years. | Self-administered | CG’s needs | “Questionnaire assessing the CGs’ needs”. Four areas (22 items): need of medical relevance, educational needs, need of emotional and psychological support, need of services. | yes | No, questionnaire developed for the study | CG |
Koenig et al. Steiner et al. | 33 informal CGs; 29 female; 11 spouse; mean age = 62.2 years | Face-to-face interviews | information needs | List of 48 items: 25 items related to needing help for the care recipient +23 items related to needs of the CG. Participants were asked to choose their top ten needs. | yes | No, instrument developed for the study | CG | |
2012/ USA [68] | Li | 208 informal CGs; 57.7% female; mean age = 49.7 years | By telephone | unmet service needs | 14-service item survey about self-care, coping, decision making, CG training and others. Yes/no questions. | No (CGs) | No, instrument developed for the study | CG |
2013/USA [20] | Black et al. | 246 informal CGs; 74,8% female; 41,5% spouse; mean age = 66,1 years | Face-to-face interviews | Patient’s and CG’s needs | 15 care recipient need domains (77 items) and 4 CGs need domains (12 items): safety, management of cognitive and noncognitive symptoms, medical comorbidities, daily activities, CG education and support needs. Three-point rating scale. | yes | Yes -The Johns Hopkins Dementia Care Needs Assessment. Psychometric properties not formally tested / concurrent validity with QOL measures [39]. | CG + patients |
2013/ UK [69] | Miranda-Castillo et al. | 128 informal CGs; 71.1% female; 64.1% spouse | Face-to-face interviews | Patient’s and CG’s needs | 24 areas and four categories: autonomy; physical needs; psychological, emotional and social needs; and CG’s needs. | No (elderly) | Yes - Camberwell Assessment of Need for the Elderly (CANE) Psychometric properties tested in PWD and CGs of PWD [55]. | CG + patients + professionals |
2013/ Netherlands [70] | Zwaanswijk et al. | 1494 informal CGs (caregiving <1 year =89, 1-4 years =744 and >4 years =661); 71.7% female; 58.2% spouse. | Self-administered | Professional support needs | 35 problems and 59 needs for additional support (currently received and needs). | yes | No, questionnaire developed for the study | CG |
2015/ USA [23] | Jennings et al. | 307 informal CGs; 64% female; 41% spouse | Self-administered | Care needs and self-efficacy | Nine-item scale with three domains: perception of the primary care provider, advice on dementia-related topics and self-efficacy for caring and for accessing help. Five-point rating scale. | yes | No, scale developed for the study | CG + professionals |
2015/ USA [30] | Sadak et al. | Baseline: 130 CGs; 80% female; 63% spouse; mean age = 66 years. Re-test: 79 CGs | Self-administered | Knowledge and skills | 35 items (23 “knowledge” and 12 “skills” items). 5-level Likert type response scale. | yes | Yes - Partnering for Better Health - Living with Chronic Illness: Dementia (PBH-LCI:D) Psychometric properties tested in CGs of PWD (Cronbach’s alpha 0.95) [30]. | CG |