Table 1 Characteristics of the included studies

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