Study, Year, Country | Characteristics | |||||||
---|---|---|---|---|---|---|---|---|
Study Design and Data Collection Methods | Participants | Gender1 | Age2 | Caregiver’s Relationship with Patient | Duration of Caregiving | Education Level of Caregiver | Study Objective | |
Boughtwood 2012 [36], Australia | Qualitative (Focus groups, Interviews) | 121 family carers, 16 GPs, 20 geriatricians, 24 bilingual and bicultural workers | 88 female, 33 male family carers | 17–90 | Not mentioned | Not mentioned | Not mentioned | To examine dementia-related information needs, access and delivery issues in Arabic, Chinese, Italian and Spanish-speaking communities in south-western Sydney, Australia |
de Jong 2009 [45], Netherlands | Qualitative (Semi-structured interviews) | 9 family carers | 5 females, 4 male | Age range for persons with dementia: 67–88 | 4 spouse, 2 child, 1 daughter-in-law | Not mentioned | Not mentioned | To explore the needs and wishes of informal caregivers of people with dementia attending or formerly attending skilled psychogeriatric day-care in the Netherlands |
Durcharme 2014, [28] Canada | Mixed methods (Interviews, Questionnaire) | 32 family carers | 24 female, 8 male | Mean: 54.28, SD: 10.5 | 25 spouse, 5 child, 2 other | Mean: 83.7 h per week, SD: 61.4 h | Mean: 14.34 years, SD: 3.2 years | To document the unmet support needs of early-onset dementia family caregivers |
Edelman 2006, [46] USA | Cross sectional (22 item Checklist Survey) | 100 family carers, 100 persons with dementia (caregivers paired with patients) | 61 female, 39 male carers. 70 female and 30 male persons with dementia. | Mean: 61, SD: 13 for carers. Mean: 80, SD: 6 for persons with dementia | 44 spouse, 46 parent/parent-in-law, 10 other relationship | Not mentioned | High school or less: 64, College education: 24, College graduates: 8, Graduate school: 4 | To identify the information and service needs of persons with Alzheimer’s disease and their family caregivers living in rural communities and to assess differences and similarities in each partner’s perspective |
Hirakawa 2009 [7], Japan | Cross sectional (Self-reported Structured Questionnaire) | 475 family carers | 366 female, 109 male | Mean: 64.9, SD: 12.2 | 205 spouse, 235 child (including daughter/son-in-law), 29 others | Not mentioned | Junior high education: 39, High School education: 200, University: 97 | To explore the following two areas: (a) the priority information needs and sources of family caregivers of home elderly patients and (b) the differences in information needs according to the severity of dementia |
Forbes 2012 [29], Canada | Qualitative (Interviews) | 14 carers, 5 persons with dementia, 14 healthcare practitioners | 11 female, 3 male carers. 2 female, 3 persons with dementia | Mean: 60.31, SD: 15.74 for carers. Mean: 77.40, SD: 11.67 for persons with dementia | 6 spouse, 5 child, 2 grandchildren, 1 nephew | 10 of the carers had provided care for 5 or more years, and 4 had provided care for less than 5 years. | Primary education or less: 1 Carer, Secondary education: 6 carers, Some post-secondary education: 1, Finished post-secondary education: 6 | To enable healthcare practitioners, care partners and people with dementia to use dementia care and information more effectively by examining their information needs, how these change over time, and how they access, assess, and apply the knowledge |
Galvin 2010 [34], USA | Cross sectional (Internet based survey) | 971 carers | 87.9% female, 12.1% male carers. 37.8% female, 62.2% male persons with dementia. | Mean: 55.9, SD: 12 for caregiver. Mean: 75.4, SD: 8.4 for persons with dementia. | 40.6% spouse, 51.7% child, 3.8% other relative, 3.8% friend. | Not mentioned | Less than high school education: 0.6%, High school education: 25.5%, College education or higher: 73.8% | To ascertain the unmet needs of the Lewy Body dementia caregivers and collect data to inform educational programming and enhance caregiver support |
Georges 2008 [37], Europe and UK | Cross sectional (Self-completed Questionnaire) | 1181 carers | 67% female, 33% male | 65% ≥ 55 years of age, 33% < 55 years of age | 47% spouse, 37% parent. | Not mentioned | Not mentioned | To identify carers’ needs, differences between countries with regard to dementia care and the level of satisfaction of carers with utilised services |
Huis 2018 [30], Netherlands | Qualitative (Online focus groups) | 36 family carers | 32 female, 4 male | Mean: 61, SD: 42–81 | 19 child or child-in-law, 17 partner | Not mentioned | Primary school: 3, High school (preparatory to vocational education): 7, High school (preparatory to university education): 6, Applied/academic university: 16, Missing: 4 | To discuss how and by whom family caregivers want to be supported in self-management when managing changes in behaviour and mood of relatives with dementia and whether family caregivers consider eHealth a useful tool for self-management support |
Iribarren 2018 [38], USA | Qualitative (Participatory design session consisting of open dialogue, interactive feedback and browsing the internet, and a questionnaire) | 24 carers | 19 female, 5 male | Mean: 59.7, SD: 7.67 | 16 child, 6 spouse, 2 other relative | Mean: 6.5 years, SD: 4.7 years | Completed eight grade or less: 1, Completed all or some of high school: 12, Degree: 10 | To identify caregiver attributes that may influences the use of Family Health Information Management System, caregiver information and communication needs and tasks, and caregiver perceptions of online tools to meet these needs |
Jensen 2015 [39], USA | Mixed methods (Telephone survey, Online survey) | 128 carers, 27 health care providers | 76% female, 24% male carers | Mean: 62.5, SD: 12.5 | 47.6% child or child-in-law, 36.5% spouses. | 3 years or more: 68.3%, Between 3 and 5 years: 38.9%, 8 or more years: nearly 15% (N = 17) | Completed some high school or had a high school degree: 17, Completed some college: 34, College degree: 33, Completed some graduate school/had a graduate degree: 33, Did not report education level: 11 | To identify the needs of family caregivers and healthcare providers caring for persons with dementia, and characterize the needs of family caregivers, as they interact with the care recipient’s health care provider |
Killen 2016 [35], UK | Cross sectional (Internet survey) | 122 carers, 3 patients | 89% female, 11% male | 24 respondents were over 60, 101 respondents below 60 | 85 children, 22 spouses, 15 sisters or son/daughters-in-law or grandchildren | Not mentioned | Not mentioned | To explore the information and support needs of people with dementia with lewy bodies, and their caregivers around the point of diagnosis, in order to inform the development of theory-based, directly delivered interventions to improve coping with stress and increase quality of life |
Koenig 2011 [31], USA | Cross sectional (48-item Survey) | 33 dementia carers, 40 rehabilitation carers | 29 female, 4 male dementia carers | Mean: 62.2 | 18 parent, 11 spouse, 3 other, 1 friend | Mean: 38.6 months | Mean 13.4 years of schooling. | To compare information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment |
Rosa 2010 [32], Italy | Cross sectional (Questionnaire) | 112 primary carers | 77 female, 35 male | Mean: 55, SD: 10 for caregivers. Mean: 80, SD: 8 for persons with dementia | Not mentioned | Not mentioned | Not mentioned | To isolate the needs caregivers express within the following critical areas: medical, social, psychological and educational, to the effect of providing loved ones with support services capable of decreasing caregiving-related workloads |
Scharett 2017 [40], USA | Cross sectional (Analysis of forum posts) | Alzheimer’s caregivers3 | Not mentioned | Not mentioned | Not mentioned | Not mentioned | Not mentioned | To understand the characteristics of information caregivers of Alzheimer’s patients are searching for and the kind of support they receive through Internet-based peer support communities |
Shreve 2016 [41], USA | Qualitative (Structured interviews) | 12 family carers | 11 female, 1 male | Not mentioned | Spouse, siblings, other relatives | Not mentioned | Not mentioned | To determine which information technology design characteristics and functionality family caregivers of adults with dementia would find most helpful |
Thomas 2002 [33], France | Cross sectional (42-item Questionnaire) | 408 caregiver/patient pairs | 276 female, 126 male carers. 236 female, 172 male persons with dementia | Female caregivers: 60.66 ± 0.79, Male caregivers: 68.7 ± 1.13. Female patients: 77.1 ± 0.47, male patients: 75.7 ± 0.57 | Not mentioned | Not mentioned | Not mentioned | To determine the complains of home caregivers, how they are interrelated and what causes them |
Turner 2010, UK | Qualitative (Focus groups, interviews) | 30 carers | 18 female, 12 male | 2/3 of carers were under 65 years of age | 47% child, 37% spouse. | 70% of carers had been carers for 2 years or more. | Not mentioned | To assess the needs for training of family carers of people with dementia, as part of an EU project to develop a training package for carers |
Vaingankar 2013 [43], Singapore | Qualitative (Focus groups, semi-structured interviews) | 63 informal carers | 38 female, 25 male | Patients age range: 54 to 93 | 37 child, 13 spouse, 13 siblings/grandchildren/daughters or sisters-in-law | Not mentioned | None/some primary education: 5, Secondary/Junior college education: 10, Vocational education: 23, University education: 24 | To elucidate the perceived unmet needs of informal caregivers of people with dementia in Singapore |
Wackerbarth 2002 [44], USA | Cross sectional (Surveys) | 128 carers | 93 female, 35 male | Mean: 58.7, Range: 34–85 for caregivers. Mean: 78.5, Range: 53–96 for patients. | Children of patient (64.5%), spouse of patient (34.7%) | Mean: 4.7 years. Range 6 months to 8 years. | Mean of 14.6 years of education, range 8–22 years. Primary education only: 1.6%, Completed high school: 32%, Some college education: 62.8%. | To identify essential information and support needs of family caregivers for individuals with Alzheimer’s disease or a related dementia, and to examine the relationship between caregiver characteristics and needs |