TABLE 1.
Demographics/characteristics of studies (n = 88, total participants 19,829)
| Author, year | Country | Sample size | Carer age mean (SD); range | Study design | Carer‐reported measure used | Diagnosis of person being cared for: | Delivery method | ||
|---|---|---|---|---|---|---|---|---|---|
| Dementia | AD | FTD | |||||||
| Alwin et al., 2010 | Sweden | 110 | 67.3 (12.0) | CS | SF‐12; WHOQoL‐5; EQ‐5D; COPE Index | ✓ | F2F or telephone interviews by the project research team | ||
| Andrén & Elmståhl, 2008 | Sweden | 130 |
61 (NS) 27–90 |
CS | CBS; SOC; NHP ‐ Swedish translation; EQ‐5D | ✓ | F2F at home by geriatric registered nurse | ||
| Armstrong et al., 2013 | US | 102 | NS | CS | ZBI | ✓ | ✓ | NS | |
| Bakker et al., 2014 | Netherlands | 205 |
58.4 (9.3) 20–88 |
CS | SSCQ | ✓ | ✓ | ✓ | F2F interviews by trained researchers and research assistants |
| Bednarek et al., 2016 | Netherlands | 205 |
58.4 (9.3) 25–88 |
CS | ZBI | ✓ | ✓ | ✓ | F2F interviews |
| Bekhet, 2014 | US | 73 |
57.46 (NS) 25–87 |
CS | ZBI | ✓ | Delivered and collected by research assistant | ||
| Bergvall et al., 2011 | Spain, Sweden, UK and US | 866 | 60.6 (14.2) Sp | CS | ZBI; SF‐12; WHOQoL‐Brief | ✓ | F2F interview with physician or a research nurse | ||
| 70.2 (12.2) Sw | |||||||||
| 71.3 (11.7) UK | |||||||||
| 66.9 (13.6) US | |||||||||
| Borsje et al., 2016 | Netherlands | 117 |
67.3 (13.3) 32–92 |
Prospective cohort study | SCQ; GHQ‐12 | ✓ | F2F interviews at home by trained research assistant | ||
| Bremer et al., 2015 | Estonia, Finland, France, Germany, Netherlands, Sweden, Spain and UK | 1029 | 64.6 (13.6) | CS | GHQ‐12; EQ‐VAS (from EQ‐5D) | ✓ | F2F interviews | ||
| Bristow et al., 2008 | England | 61 | Carers 62.9 (5.9) Controls 63.3 (5.4) | Comparative CS | GHQ‐30; PSS‐10; SOS; CBS; WCQ‐R; SACL | ✓ | Questionnaire packs handed out | ||
| Brodaty et al., 2014 | Australia | 732 | 78.3 (7.4) | Prospective cohort study | ZBI | ✓ | ✓ | F2F interviews | |
| Campbell et al., 2008 | England | 74 |
67.76 (12) 37–90 |
CS | ZBI; MSQFOP | ✓ | Measures handed to carers at clinic, posted back | ||
| Chen et al., 2013 | US | 87 | NS | CS | ASA; GSS; CDS; LEE | ✓ | Postal with phone interview | ||
| Chen et al., 2014 | US | 91 | 55 (7.1) | CS | CMAI; PSS; CDS; CSS‐6 | ✓ | Postal | ||
| Conde‐Sala et al., 2014 | Spain | 330 | 59.7 (0.8) at baseline | Prospective cohort study | ZBI; SF‐12 | ✓ | F2F interview | ||
| Contador et al., 2012 | Spain | 130 | 58.62 (12.4) | CS | BEEGC‐20; ZBI | ✓ | F2F interviews | ||
| Cooper, et al., 2008 and Cooper, Owens et al., 2008 | England | 93 (83) |
63.9 (14.8) 64.2 (15.4) |
CS of a longitudinal study at TP1: 1‐year; TP2: 3.5 year | TP1: Brief COPE; HSQ‐12; SRRS; ZBI; QoL‐AD; TP2: AQ; Brief COPE; ZBI | ✓ | F2F interviews | ||
| Creese et al., 2008 | Canada | 60 |
73.65 (9.3) 49–93 |
CS | PSQI – modified; SF‐12; HPLP; S‐ZBI | ✓ | Telephone interviews | ||
| DeFazio et al., 2015 | Italy | 150 |
NS 94 > 50 years |
CS | CBI | ✓ | F2F Interviews by physicians | ||
| DeLabra et al., 2015 | Spain, Poland, Denmark | 101 |
61.25 (12.6) 25–88 |
CS | ZBI; CCS: SSQRS; RCSS | ✓ | ‐ | ||
| Di Mattei et al., 2008 | Italy | 112 |
58.94 (12.05) 32–81 |
CS | CBI; COPE ‐ Italian | ✓ | F2F on‐ward inferred, from research assistants | ||
| Diehl‐Schmid et al., 2013 | Germany | 94 |
59.11 (11.7) 24–78 |
CS | CSI | ✓ | ✓ | Pack posted, follow‐up phone call | |
| Ducharme et al., 2016 | Canada | 96 |
YOD 53.06 (10.2) OOD 63.88 (13.0) |
Comparative descriptive | PCS; RSCSE; CAMI; FCCS; PDI; PFCNS; ISSB | ✓ | ✓ | F2F by trained interviewers | |
| Epstein‐Lubow et al., 2008 | US | 33 |
No persisting burden: 65.5 (14.0) Persisting: 60.7 (8.4) |
Longitudinal cohort | ZBI | ✓ | F2F at home 6 and 12 months | ||
| Ferrara et al., 2008 | Italy | 100 |
Male 59.4 (14.3) Female 56.1 (13.3) |
Retrospective | CBI | ✓ | F2F interviews at clinic | ||
| Fonereva et al., 2012 | US | 41 |
Carers 66.4 (7.8) Non‐carers 66.4 (7.9) |
Comparative CS | PSS | ✓ | ✓ | ✓ | Personal digital Assistant (PDA) – collected 3–4 times during the day at random |
| Gallagher et al., 2011 | Ireland | 102 |
64.4 (14) 31–87 |
CS | RUD‐Lite; Carers' checklist; DIS; ZBI; Brief COPE; SES | ✓ | F2F questionnaire | ||
| Galvin et al., 2010 | US | 962 | 55.9 (12) | CS | ZBI; informal questions | ✓ | Internet‐based survey monkey | ||
| García‐Alberca et al., 2012 | Spain | 80 | 62.15 (10.4) | CS | ZBI; STAI‐S; CSI | ✓ | F2F interviews by authors (psychiatrist, neuropsychologist, neurologist) | ||
| Garre‐Olmo et al., 2016 | Spain | 306 | 61.2 (13.9) | CS multi centre | ZBI | ✓ | F2F at clinic visit by physician or psychologist | ||
| George & Steffen, 2014 | US | 53 | 62.61 (10.5) | Longitudinal cohort | CSE‐ R; SF‐12; RSCSE | ✓ | Phone interviews 12 and 18 months after intervention | ||
| Giebel & Sutcliffe, 2018 | England | 272 | 67 (12) | CS | AC‐QOL; GHQ – 12 | ✓ | F2F or hand/postal of questionnaires (research team attended carer support groups) | ||
| González‐Abraldes et al., 2013 | Spain | 33 |
57.6 (11.3) 35–82 |
CS | ZBI – Spanish version | ✓ | Postal | ||
| Gusi et al., 2009 | Spain | 110 |
Carers 60.6 (6.6) Non‐carers 62.6 (5.6) |
Comparative CS | SF‐12 | ✓ | F2F interview at home by a trained interviewer | ||
| Harmell et al., 2011 | US | 100 | 73.8 (8.1) | CS | CSE – 13 | ✓ | F2F interview at home | ||
| Haro et al., 2014 | France, Germany, UK | 1497 | 67.3 (12) | Prospective cohort (multi centre) | ZBI; EQ‐5D; RUD | ✓ | — | ||
| Holley & Mast, 2009 | US | 80 | 60.53 (12.7) | CS | MM‐CGI; AGS; ZBI‐SF | ✓ | F2F or postal, chosen by participant | ||
| Janssen et al., 2017 | Germany, Ireland, Italy, Netherlands, Norway, Portugal, Sweden, UK | 453 | 66.4 (13.3) | Prospective cohort | RSS; SOC‐13; LOCBS; CarerQoL | ✓ | — | ||
| Kaizik et al., 2017 | Australia | 90 |
Children (mild) 32.2 (9.7) Spouses (mild) 62.5 (11) Children (severe) 30.7 (10.1) Spouses (severe) 61.9 (9) |
CS | ZBI; SNI; IBM; DASS‐21 | ✓ | Online survey | ||
| Kaufman et al., 2010 | US | 141 |
White 53.5 (11.8) African American 49.4 (11.9) |
CS | SPMSQ; ISEL; CCI; QoLI | ✓ | Telephone interviews by trained interviewers | ||
| Kowalska et al., 2017 | Poland | 58 |
54.7 (12.6) 21–78 |
CS | CBS; BSSS; SWLS | ✓ | F2F interview by psychologist | ||
| Lo Sterzo & Orgeta, 2017 | UK | 155 |
NS 26–82 |
CS | BIPQ; SOC | ✓ | Handed out then completed at home and returned to researcher | ||
| Luchsinger et al., 2015 | US | 139 | 59.29 (10.4) | CS | ZBI | ✓ | ✓ | — | |
| Majoni & Oremus, 2017 | Canada | 200 |
Retired 68–80 Employed 51–62 |
CS | EQ‐5D‐3L | ✓ | F2F by trained interviewers | ||
| Marziali et al., 2010 | Canada | 232 | NS | CS | EPQ‐R; RSCSE; MSPSS; HSQ‐12 | ✓ | F2F Interview from trained graduate and senior undergrad allied health students | ||
| Maseda et al., 2015 | Spain | 58 |
56.3 (1.5) 28–82 |
CS | ZBI – Spanish version; STAI | ✓ | Postal | ||
| Mausbach et al., 2011 | US | 108 | 73.88 (8) | CS | PANAS; PES‐AD; WCC‐R; CSE | ✓ | F2F at home | ||
| McLennon et al., 2011 | US | 84 |
73.3 (10.5) 49–96 |
CS | ZBI; SF‐36; FMTCG | ✓ | F2F at location and time chosen by carer ‐ by chief investigator | ||
| Melo et al., 2011 | Portugal | 109 | 67.0 (12.5) | CS | ZBI; NEO‐FFI ‐ Portuguese | ✓ | F2F in own home by trained interviewer | ||
| Melo et al., 2017 | Portugal | 98 | 66.8 (12.7) | CS | ZBI; NEO‐FFI – Portuguese | ✓ | F2F at home by trained nurse | ||
| Millenaar et al., 2016 | Holland | 328 |
YOD 59.02 (9.3) OOD 64.3 (12.4) |
Longitudinal cohort | SSCQ | ✓ |
NS 6 monthly follow‐ups over 2 years |
||
| Miller et al., 2010 | US | 421 |
63.0 (15.5) 22–89 |
CS | CDS; ZBI; | ✓ | — | ||
| Molinuevo & Hernández, 2011 | Spain | 249 | 59.9 (14.9) | Prospective multicentre study | SF‐36; ZBI | ✓ | — | ||
| Mougias et al., 2015 | Greece | 197 | 59.18 (13.9) | CS | ZBI | ✓ | — | ||
| O'Dwyer et al., 2013 | Australia and US | 120 | 58.76 (10.7) | CS | SES; SF‐12; ZBI; Brief COPE; BHS; ADKS; LOT; DSSI; SBQ‐R | ✓ | Online survey using LimeSurvey | ||
| O'Dwyer et al., 2016 | Australia | 566 |
Non‐suicidal 64.14 (11.3) Suicidal 56.60 (10.1) |
CS | SES; SF‐12; ZBI; Brief COPE; BHS; ADKS; LOT; DSSI; SBQ‐R; BRLI | ✓ | Online survey or in hard copy | ||
| Orgeta & Lo Sterzo, 2013 | UK | 170 |
62.42 (11.2) 24–88 |
CS | SOC; RSS; EQ‐VAS | ✓ | — | ||
| Papastavrou et al., 2015 | Greece | 208 | Reported in age brackets and % | Comparative CS | SCQ‐G; ZBI; | ✓ | F2F interviews by trained research assistant nurse graduates at home | ||
| Papastavrou et al., 2014 | Greece | 76 | Reported in age brackets and % | CS | QOL‐AD; ZBI | ✓ | — | ||
| Papastavrou et al., 2012 | Greece | 410 |
AD 56.8 (13.3) Schiz. 56 (15.0) Cancer 50.6 (13.4) |
Comparative CS | ZBI | ✓ | F2F interviews at home/clinic | ||
| Papastavrou et al., 2011 | Greece | 172 |
56.8 (13.4) 25–88 |
CS | ZBI; WCQ‐ Greek | ✓ | F2F in own home | ||
| Pertl et al., 2017 | Ireland | 253 |
69.64 (7.8) 50–90 |
CS | PSS‐4; SES; BIPAQ | ✓ | — | ||
| Quinn et al., 2012 | UK | 447 | 68 (12.5) | CS | MECS; PAI; CCS; MICS | ✓ | Postal | ||
| Raggi et al., 2015 | Italy | 73 |
64 (IQR 52–72) |
CS | CBI | ✓ | F2F in clinic | ||
| Raivio et al., 2015 | Finland | 728 |
PWB mod/good 77.7 (5.9) Poor 78.7 (7.1) |
CS | PWB | ✓ | Postal | ||
| Riedijk et al., 2008 and Riedijk et al., 2009 | Holland | 63 | 60.7 (9.6) | CS | SF‐36; SCQ; UCL; SSL; SCL‐90‐R | ✓ | Telephone interview by trained psychologists | ||
| Roche et al., 2015 | Holland | 46 | 59.11 | CS | CSI; QoL‐AD; Brief COPE | ✓ | Postal or handed out | ||
| Roepke et al., 2009 | US | 73 |
Carers 72.16 (9.6) Non‐carers 68.41 (6.7) |
CS | MFSI‐SF; PM | ✓ | — | ||
| Romero‐Moreno et al., 2011 | Spain | 167 | 59.88 | CS | RSCSE; ZBI; POMS | ✓ | F2F interview at social or health centre | ||
| Rosa et al., 2010 | Italy | 112 | 55 (10) | CS | CBI; STAI | ✓ | F2F interview | ||
| Rosness et al., 2011 | Norway | 49 |
AD 60.8 (5.3) Non‐AD 58.5 (8.3) |
CS | QoL‐AD – Norwegian Version | ✓ | ✓ | F2F interviews in memory clinic | |
| Salgado‐García et al., 2015 | US | 642 |
Smoker 57.02 (12.7) Non‐Smoker 62.84 (13.2) |
CS | ZBI; SF‐36; PAC; Brief RCOPE | ✓ | F2F interview at home | ||
| Savundranayagam & Orange, 2011 | Canada/US | 84 |
65.64 36–90 |
CS | PCI‐DAT | ✓ | — | ||
| Scholzel‐Dorenbos et al., 2009 | Netherlands | 97 | 73.5 (7.2) | CS | SEIQoL; ZBI; SRB; SPPIC | ✓ | F2F interviews – same person | ||
| Simonelli et al., 2008 | Italy | 100 | 55–85 | CS | CBI | ✓ | F2F interview at clinic | ||
| Skarupski et al., 2010 | US | 396 |
Blacks 56.9 (13.3) Whites 61.2 (13.6) |
Longitudinal cohort | Caregiver burden (Lawton); MSPSS; PA; CSS‐5 | ✓ | F2F or phone interviews 3 monthly over 4 years | ||
| Stensletten et al., 2016 | Norway | 97 |
79 65–96 |
CS | RSS; SPS – Norwegian; SOC | ✓ | Handed out in community clinic | ||
| Sun et al., 2010 | US | 141 | 52 | CS | CCI; QoLI; COPE | ✓ | Telephone surveys | ||
| Sutcliffe et al., 2017 | Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, UK | 1223 | 64.7 (13.4) | CS | ZBI; RUD | ✓ | F2F interviews | ||
| Svendsboe et al., 2016 | Norway | 186 | 74.9 (7.8) | CS | RSS | ✓ | F2F by clinician/nurse | ||
| Torrisi et al., 2017 | Italy | 27 | 76.2 (7.1) | CS | CBI | ✓ | F2F with psychologist | ||
|
Välimäki et al., 2009 and Välimäki et al., 2014 and Välimäki et al., 2016 |
Finland | 236 |
71.6 (7.2) (48–85) |
CS |
Study1: SOC; HRQoL‐VAS; GHQ; Study2: SOC Study3: HRQoL‐VAS |
✓ | F2F trained psychologist | ||
| von Känel et al., 2014 | US | 126 | 74.2 (7.9) | Longitudinal cohort | PANAS; PSQI | ✓ | F2F in‐home by trained research staff up to 4 years | ||
| Wawrziczny et al., 2017 | France | 150 | 67.2 (6.5) | CS | CRA; PFCNS; KSS; SF‐36; ISSB; FCCS; PDI; RSCSE | ✓ | F2F at home or clinic (Choice of carer) | ||
| Wilks & Croom, 2008 | US | 229 | 45 | CS | PSS; S‐PSSS; S‐RS | ✓ | Surveys done at conferences | ||
| Wilks et al., 2011 | US | 419 | 61 | CS | CITS; RS | ✓ | Postal | ||
| Zucchella et al., 2012 | Italy | 126 | 56.11 (12.4) | CS | CBI; COPE | ✓ | F2F interviews by clinicians | ||
| Zvěřová, 2014 | Czech Republic | 30 | NS | Longitudinal cohort | ZBI | ✓ | F2F interviews 0, 4, 8, months | ||
Abbreviations: AC‐QoL, Adult Carer Quality of Life; AD, Alzheimer's disease; ADKS, Alzheimer's Disease Knowledge Scale; AGS, Anticipatory Grief Scale; AQ, Attachment Questionnaire; ASA, Attachment Script Assessment; BEEGC‐20, Battery of Generalized Expectancies of Control Scales (also known as GECSB); BHS, Beck Hopelessness Scale; BIPAQ, Brief International Physical Activity Questionnaire; BIPQ, Brief Illness Perception Questionnaire; BRLI, Brief Reasons for Living Inventory; BSSS, Berlin Social Support Scale; CAMI, Carers' Assessment of Managing Index; CarerQoL, Care‐related Quality of Life scale; CBI, Caregiver Burden Inventory (Novak); CBS, Caregiver Burden Scale; CCI, Consequences of Care Index; CCS, Caregiver Competence Scale; CDS, Caregiving Distress Scale (from the NPI); CITS, Coping in Task Situations questionnaire; CMAI, Cohen‐Mansfield Agitation Inventory; COPE Index, Coping Orientations to Problems Experienced scale (Brief‐); CRA, Caregiver Reaction Assessment; CS, cross‐sectional; CSE, Coping Self‐efficacy scale; CSI, Coping Strategies Inventory; CSS, Caregiver Satisfaction Scale (6‐items, 5‐items); DASS 21, Depression, Anxiety and Stress Scale‐21; DIS, Desire to Institutionalize Scale; DSSI, Duke Social Support Index; EPQ‐R, Eysenck Personality Questionnaire Revised; EQ‐5D, Euro‐Quality of life; EQ‐VAS, EuroQol‐Visual Analogue Scale; F2F, face‐to‐face; FCCS, Family Caregiver Conflict Scale; FMTCG, Finding Meaning Through Care‐Giving; FTD, frontotemporal dementia; GHQ‐12, General Health Questionnaire 12‐tem version; 30‐item version; GSS, Gilleard Strain Scale; HPLP, Health Promoting Lifestyle Profile; HSQ‐12, Health Status Questionnaire; IBM, Intimate Bond Measure; ISEL, Interpersonal Support Evaluation List; ISSB, Inventory of Socially Supportive Behaviours; KSS, Knowledge of Services Scale; LEE, Level of Expressed Emotion scale; LOCBS, Locus Of Control of Behaviour Scale; LOT, Life Orientation Test; MECS, Motivations in Elder Care Scale; MFSI‐SF, Multidimensional Fatigue Symptom Inventory‐Short Form; MM‐CGI, Marwit‐Meuser Caregiver Grief Inventory; MSPSS, Multidimensional Scale of Perceived Social Support; MSQFOP, Marital Satisfaction Questionnaire For Older Persons; NEO‐FFI, NEO Five Factor Inventory (personality traits); NHP, Nottingham Health Profile; NS, not stated; OOD, Older Onset Dementia; PA, Positive affect; PAC, Positive Aspects of Caregiving; PAI, Positive Affect Index; PANAS, Positive And Negative Affect Scale; PCI‐DAT, Perception of Conversation Index – Dementia of the Alzheimer's Type; PCS, Preparedness for Caregiving Scale; PDI, Psychological Distress Index; PES‐AD, Pleasant Events Schedule ‐ Alzheimer's Disease; PFCNS, Planning for Future Care Needs Scale; PM, Pearlin Mastery scale; POMS, Profile Of Mood States (Tension Subscale); PSQI, Pittsburgh Sleep Quality Index; PSS, Perceived Stress Scale; PSSS, Perceived Social Support Scale (‐S, Short); PWB, Psychological Well‐ Being (scale); QoL‐AD, Quality of Life – Alzheimer's Disease; QoLI, Quality of Life Inventory; RCOPE, Religious Coping measure; RCSS, Revised Caregiving Satisfaction Scale; RS, Resilience Scale (S‐ short); RSCSE, Revised Scale for Caregiving Self‐Efficacy (Steffen); RSS, Relative Stress Scale; RUD, Resource Utilisation in Dementia (‐Lite); SACL, Stress Arousal CheckList; SBQ‐R, Suicidal Behaviours Questionnaire (−R, Revised); SCL‐90‐R, Revised Symptom CheckList; SCQ – G, Social Capital Questionnaire‐Greek version; SCQ, Sense of Competence Questionnaire (‐S, Short); SEIQoL, Schedule for the Evaluation of Individual Quality of Life; SES, Self‐Efficacy Scale (Fortinsky); SF‐12; SF‐36, Short Form 12; 36 questions; SNI, Social Network Index; SOC, Sense Of Coherence scale (−13 item); SOS, Significant Others Scale; SPMSQ, Short Portable Mental Status Questionnaire; SPPIC, Self‐Perceived Pressure from Informal Care; SPS, Social Provision Scale; SRB, Self‐Rated Burden scale; SRRS, Social Readjustment Rating Scale; SSL, Social Support List; SSQRS, Social Support Questionnaire: Short form Revised; STAI, State–Trait Anxiety Inventory; SWLS, Satisfaction With Life Scale; TP, Timepoint; UCL, Utrecht Coping List; UK, United Kingdom; US, United States; WCC, Ways of Coping Checklist (−R Revised); WCQ, Ways of Coping Questionnaire (−R Revised); YOD, Younger Onset Dementia; ZBI, Zarit Burden Interview (S‐ZBI Short version).