Time use by family caregivers of elderly with dementia: an integrative review

To describe the development of measures used between 1993 and 2016 to evaluate time use by family caregivers of elderly with dementia and to find out the patterns of time use identified in the literature.

Method:

An integrative review of articles was performed, indexed by the following terms: time use management, family caregiver and elderly.

Results:

A total of 17 articles were found, of which seven were methodological. Among these seven articles, five were psychometric. The most frequently used measures were self-reporting (matrices, questionnaires and inventories), validated through objective measures of occurrence and duration. Longitudinal, prospective, clinical and correlational studies showed that care time covaries with the receptors’ dependence and that the caregivers’ subjective well-being is more affected by the time restriction to free choice activities than the burden resulting from obligatory activities.

Final considerations:

Valid self-reporting measures are widely used nowadays and they are considered to be effective to assess the objective and subjective costs of health care for dementia.

Descriptors:
Time; Dependence; Routine Activities; Long-lasting Care; Alzheimer’s Disease

Authors, year and country	Objective(s)	Design, participants, variables and measures	Results of interest
Moss MS, Lawton MP, Kleban MH, Duhamel L, 1993. USA⁽¹²12 Moss MS, Lawton MP, Kleban MH, Duhamel L. Time use of caregivers of impaired elders before and after institutionalization. J Gerontol [Internet]. 1993[cited 2016 Apr 22];48(3):S102-11. Available from: https://www.ncbi.nlm.nih.gov/pubmed 8482826 https://www.ncbi.nlm.nih.gov/pubmed 8482... ⁾	To describe the estimates of "care activities x time" in daily records of family caregivers, before and after the institutionalization of elderly individuals.	In this study, 165 caregivers, included in the waiting lists of geriatric clinics and state geriatric clinic assessment programs, were submitted to baseline (Time 1) and follow-up measures, five months later (Time 2), when 77 elderly individuals had been institutionalized. "Yesterday Interview" and "time x activity matrix" were used to collect estimates of time spent on care activities (time budgets) during each of the 96 periods of 15 minutes in which one day of waking time was divided.	At Time 1, care giving corresponded to 12.4% of daily waking time; obligatory activities, 52.4%; and discretionary activities, 35.2%. Those performed by caregivers exclusively totaled 46%. A higher probability of institutionalization and longer daily care time were associated with providing more instrumental help, not working, having a low income and co-residence. At Time 2, institutionalization represented an increase in one hour and 47 daily minutes of time invested in discretionary activities by caregivers.
Clipp EC, Moore MJ, 1995. USA⁽¹⁹19 Clipp EC, Moore MJ. Caregiver time use: an outcome measure in clinical trial research on Alzheimer’s disease. Clin Pharmacol Ther [Internet]. 1995[cited 2016 Apr 22];58(2):228-36. Available from: https://www.ncbi.nlm.nih.gov/pubmed/7648773 https://www.ncbi.nlm.nih.gov/pubmed/7648... ⁾	To assess the variations in care time of formal and informal caregivers according to the level of cognitive deficit associated with AD, due to the administration of a drug vs. placebo.	A double-blind randomized clinical trial with 441 patients with Alzheimer's disease was conducted, with two weeks of preparation, 24 of treatment, six of discontinuing treatment, and an undefined period of continued treatment. The experimental group (EG) received 150 mg/day and 225 mg/day of Velnacrine Maleate; the control group (CG) received a placebo. The cognitive functions of patients were tested with the Alzheimer's Disease Assessment Scale (ADAS). A total of 160 informal and formal caregivers participated in the time use measures at the baseline, in the 10th and 24th week of treatment. Care time was assessed with the Caregiver Activities Time Survey (CATS; © Hoechst-Roussel, 1990).	The higher the cognitive impairment of patients, the longer the time dedicated for care. After 24 weeks of treatment with the drug, there was a reduction of 2.6 hours/day in the care time provided by family members and friends; except for feeding, whose time increased by 8.7 hours/day. The main reductions in time for informal care were for supervision (2.1 hours/day) and bathing (36 minutes/day). The time spent on formal care activities was not reduced with the treatment.
Davis KL, Marin DB, Kane R, Patrick D, Peskind ER, Raskind MA, et al., 1997. USA⁽²⁰20 Davis KL, Marin DB, Kane R, Patrick D, Peskind ER, Raskind MA, et al. The Caregiver Activity Survey (CAS): development and validation of a new measure for caregivers of persons with Alzheimer’s disease. Int J Geriatr Psychiatry [Internet]. 1997[cited 2017 May 1];12(10):978-88. Available from: https://www.ncbi.nlm.nih.gov/pubmed/9395929 https://www.ncbi.nlm.nih.gov/pubmed/9395... ⁾	To obtain evidence on the test-retest reliability and concurrent validity for the Caregiver Activity Survey (CAS) with family caregivers.	A methodological study was conducted with 42 family caregivers. The Alzheimer's Disease Assessment Scale - ADAS-cog, Mini Mental State Exam (MMSE), Physical Self Maintenance Scale (PSMS), and Montegomery Burden Scale (MBS) were applied six times (three times in the 1st week), none in the 2nd week and three more times in the 3^rd week.	CAS showed a high level of test-retest reliability (0.88) and high convergent validity when compared to the ADAS-cog (r = 0.61), o MMSE (r = 0.57) and PSMS (r = 0.43). High significant correlation was found between the number of hours of care and scores of patients in the ADAS-cog, especially for memory. Each extra point in the ADAS-cog corresponded to an increase in 15 daily minutes of care; and each extra point in the ADAS-non-cog corresponded to 25 minutes.
Marin DB, Dugue M, Schmeidler J, Santoro J, Neugroschl J, Zaklad G, et al., 2000. EUA⁽²¹21 Marin DB, Dugue M, Schmeidler J, Santoro J, Neugroschl J, Zaklad G, et al. The Caregiver Activity Survey (CAS): longitudinal validation of an instrument that measures time spent caregiving for individuals with Alzheimer’s disease. Int J Geriatr Psychiatry [Internet]. 2000[cited 2016 May 5];15(8):680-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10960880 https://www.ncbi.nlm.nih.gov/pubmed/1096... ⁾	To obtain evidence on concurrent and predictive validity of the Caregiver Activity Survey (CAS) with five items.	A longitudinal study was conducted (one year and six months) with 18 patients out of an initial group of 44 who were followed by 6-month visits. CAS and PSMS were applied to caregivers and MMSE and ADAS were applied to patients.	There was an increase in 2.8 hours/day from the first to the last measure, especially for direct care and supervision. Throughout time, CAS was significantly correlated to the MMSE, ADAS-cog and PSMS. Care time increased with the deterioration of elderly condition. As their condition deteriorated, caregivers spent less time communicating with them and more time supervising them.
Stevens AB, Coon D, Wisniewski S, Vance D, Arguelles S, Belle S, et al., 2004. USA⁽²²22 Stevens AB, Coon D, Wisniewski S, Vance D, Arguelles S, Belle S, et al. Measurement of leisure time satisfaction in family caregivers. Aging Ment Health [Internet]. 2004[cited 2017 May 1];8(5):450-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/15511743 https://www.ncbi.nlm.nih.gov/pubmed/1551... ⁾	Psychometric analysis of a measure of satisfaction with leisure time among family caregivers of elderly with AD.	Validation study with data on caregivers from the Resources for Enhancing Alzheimer´s Caregiver Health (REACH), through which a baseline measure and three follow-up measures were performed, separated by six months. A total of 1,222 caregivers were submitted to the Leisure Time Satisfaction Scale - LTS (with time for oneself,; to go to church and other institutional meetings; for leisure activities; to go to restaurants and social activities, to have fun with others, and to visit family and friends), CES-D and the Lubben Social Network Index.	LTS achieved good internal consistency (Cronbach α = 0.80); its one-factor structure showed high levels of correlation with scales of satisfaction with social support, relationship network, and items from the sub-scale of well-being of the CES-DS; negative correlations between LTS and the time spent helping with ADL and supervising. Good psychometric properties were found in the validity and internal reliability tests for LTS.
Feldman HH, Van Baelen B, Kavanagh SM, Torfs KE, 2005. EUA, Canadá, Europe⁽²³23 Feldman HH, Van Baelen B, Kavanagh SM, Torfs KE. Cognition, function, and caregiving time patterns in patients with mild-to-moderate Alzheimer disease: a 12-month analysis. Alzheimer Dis Assoc Disord [Internet]. 2005[cited 2016 May 5];19(1):29-36. Available from: https://www.ncbi.nlm.nih.gov/pubmed/ 15764869 https://www.ncbi.nlm.nih.gov/pubmed/ 157... ⁾	To investigate the relationships between the decrease in cognition and functionality in ADL and the time of care provided by paid and unpaid caregivers.	A double-blind randomized clinical trial with an EG (sabeluzol) and CG (placebo) was performed during one year, including 331 patients with moderate AD. Cognition was assessed with the MMSE and ADS-cog, while ADLs were assessed with the Disability Assessment in Dementia (DAD). Care time was estimated for each DAD domain: two weeks after each of the assessments made with a questionnaire (an initial measure and three more every three months).	There was a steady decrease in score in the ADAS-cog and MMSE. After 12 months, informal caregivers spent 14 more hours every two weeks helping with BADLs. Proportionately, formal care time increased more than informal care time after one year, varying from 33+17 hours to 47+ 26 hours for every two weeks.
Van den Berg B, Spauwen P, 2006. Australia⁽²⁴24 Van den Berg B, Spauwen P. Measurement of informal care: an empirical study into the valid measurement of time spent on informal caregiving. Health Econ [Internet]. 2006[cited 2017 May 1];15(5):447-60. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16389664 https://www.ncbi.nlm.nih.gov/pubmed/1638... ⁾	To investigate the validity of diaries of time use in real time and diaries based on previous day recall kept by family caregivers.	In this study, 199 family caregivers of elderly with neurological, psychological and neuromuscular problems completed two types of "time vs. activity" diary: one in real time, six times throughout the day, divided into 96 periods of 15 minutes; and the other based on "previous day recall + time matrix vs. activities". Activities included support for BADL (4) and IADL (6) and housework, sleep, paid work and volunteer work. Up to two simultaneous activities per interval were recorded.	When the normal housework time was disregarded, care time lasted 5.8 hours/day on average. Care activities performed jointly overestimated caregivers' time by 168 hours/week. Previous day recall overestimated time and showed lower stability in the test-retest situation, compared to real time diaries.
Taylor DH Jr, Kuchibhatla M, Østbye T, 2008. USA⁽²⁵25 Taylor DH Jr, Kuchibhatla M, Østbye T. Trajectories of caregiving time provided by wives to their husbands with dementia. Alzheimer Dis Assoc Disord [Internet]. 2008[cited 2016 May 5];22(2):131-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18525284 https://www.ncbi.nlm.nih.gov/pubmed/1852... ⁾	To identify the paths of care provided by wives to their husbands with AD.	A longitudinal study with data from 828 women married to men who have AD, derived from four annual surveys (1999-2002) of the National Longitudinal Caregiver Study (1999-2002). Data on time use obtained with a questionnaire including 22 items that asked about daily care activities and respective durations at four different times.	A total of three distinct paths of daily care time were found, dependent on the development of dementia: 56.4% of caregivers spent from 252 minutes/day at the baseline to 471 minutes/day in the last measurement, 30.3% spent from 464 minutes/day to 533minutes/day, and 13.3% showed a reduction from 719 minutes/day to 421 minutes/day.
Neubauer S, Holle R, Menn P, Grossfeld- Schmitz M, Graesel, E, 2008. Germany⁽²⁶26 Neubauer S, Holle R, Menn P, Grossfeld-Schmitz M, Graesel E. Measurement of informal care time in a study of patients with dementia. Int Psychogeriatr [Internet]. 2008[cited 2016 May 5];20(6):1160-76. Available from: https://www.ncbi.nlm.nih.gov/pubmed/ 18606044 https://www.ncbi.nlm.nih.gov/pubmed/ 186... ⁾	To assess total informal care time, per week and per day and to estimate bias due to neglect for the time of other caregivers.	A total of 375 caregivers participating in the intervention study entitled Dementia Care Initiative in Primary Practice, which lasted two years, were submitted to an expanded version of the Resource Utilization in Dementia (RUD), asking about the number of days in the previous four weeks and the number of hours per day used to help patients with AD in IADLs and BADLs and the number of hours spent supervising them.	The following were found: weekly means of 42.8 hours of BADLs, 57.8 hours of IADLs and 52.5 hours of supervision; 47.6% of daily time spent in BADLs, 64,6% in IADLs and 30.6% in supervision. Spouses and less healthy caregivers cared for longer time. Of all elderly individuals, 57% had an informal caregiver, which would lead to + 14% of distortion in the estimates of time of primary caregivers if they were ignored.
Wimo A, Jonsson L, Zbrozek A, 2010. Sweden⁽²⁷27 Wimo A, Jonsson L, Zbrozek A. The Resource Utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Health Aging [Internet]. 2010[cited 2016 May 5];14(8):685-90. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20922346 https://www.ncbi.nlm.nih.gov/pubmed/2092... ⁾	To analyze time use measure validity, based on the RUD, among informal caregivers of elderly with AD.	A prospective observational study was performed with 14 patient-caregiver pairs, married to each other, living in the community, who produced 47 measures of time based on two types of retrospective measures (RUD and diary about previous day recall of time use), which were compared to data from direct observation (30 sessions).	There was a high agreement between RUD and the diaries about previous day recall, regarding care in BADL (ICC = 0.93), supervision (ICC = 0.87) and total care time (ICC = 0.91) and IADL (ICC = 0.75). The ICCs between direct observation and RUD were as follows: BADL, ICC = 0.81; IADL, ICC = 0.74; supervision, ICC = 0.78 and total time, ICC = 0.80.
Shahly V, Chatterji S, Gruber MJ, Al-Hamzawi A, Alonso J, Andrade LH, et al., 2013. USA and 22 other countries⁽²⁸28 Shahly V, Chatterji S, Gruber MJ, Al-Hamzawi A, Alonso J, Andrade LH, et al. Cross-national differences in the prevalence and correlates of burden among older family caregivers in the World Health Organization World Mental Health (WMH) Surveys. Psychol Med [Internet]. 2013[cited 2017 May 1];43(4):865-79. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22877824 https://www.ncbi.nlm.nih.gov/pubmed/2287... ⁾	To analyze the objective and subjective burden associated with health problems in the family, family support and vulnerability of caregivers to objective and subjective burden.	An observational epidemiological study was conducted in 20 countries/members of the World Health Organization (WHO), divided according to the level of income of the population. A total of 13,892 informal caregivers aged 50 years and older responded to a questionnaire (developed for this study) about the objective burden (time and money) and subjective burden (suffering and shame) associated with providing informal care to 1st degree relatives with severe physical and mental health conditions. In each country, the differential burden was analyzed according to income level, kinship, and type of health condition.	The mean number of hours of care varied from 16.6 to 23.6/week. From 26.9% to 42.5% of caregivers had 1st degree relatives with serious health problems; from 35.7% to 42.5% reported objective and subjective burden. Of the total number, between 25.2% and 29.0% had burden of time; between 13.5% and 19.4% had financial burden; between 24.4% and 30.6%, suffering; and between 6.4% and 21.7%, shame. In low-income and middle-income countries, the financial burden was two to three times higher than that of high-income countries. Wives and daughters reported more burden than other women without family ties to those receiving care.
Haro JM, Kahle-Wrobleski K, Bruno G, Belger M, Dell'Agnello G, Dodel R, et al., 2014.France, Germany and United Kingdom⁽²⁹29 Haro JM, Kahle-Wrobleski K, Bruno G, Belger M, Dell’Agnello G, Dodel R, et al. Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours. J Nutr Health Aging [Internet]. 2014[cited 2016 May 5];18(7):677-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25226106 https://www.ncbi.nlm.nih.gov/pubmed/2522... ⁾	To characterize caregivers of elderly in the community, according to the severity of AD of patients, and to identify factors associated with perceived burden and care time.	In this study, 1,497 primary informal caregivers of patients with AD recruited in the community, divided by gender, co-residence, being a spouse, working, comorbidities and suffering, according to patients 'psychiatric symptoms, in the context of the GERAS study on costs and resources for AD care, responded to Zarit 's scale of perceived burden and the RUD, during the month prior to the visit for the baseline measurements.	There was an increase in the severity of AD associated with the increase in burden and care time. The higher the level of dependence on IADL, the greater the severity of AD and burden. Co-residence, being male, living in a rural area, apathy and psychosis in patients, medical emergencies, not receiving food at home, and receiving financial support to provide care were associated with longer time dedicated to supervision. Burden was associated with younger age and depression of caregivers, caring for male patients and providing care for longer time.
Hughes TB, Black BS, Albert M, Gitlin LN, Johnson DM, Lyketsos CG, et al., 2014. USA⁽³⁰30 Hughes TB, Black BS, Albert M, Gitlin LN, Johnson DM, Lyketsos CG, et al. Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs. Int Psychogeriatr [Internet]. 2014[cited 2016 May 5];26(11):1875-83. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104063 https://www.ncbi.nlm.nih.gov/pubmed/2510... ⁾	To analyze the relationship of unmet dementia-related care needs of community dwellingindividuals, and their caregivers to measures of caregiver burden.	A total of 254 community elderly with AD and their caregivers (246), who responded to the Zarit's scale of perceived burden and the Johns Hopkins Dementia Care Needs Assessment, were selected from the database of this study. Elderly individuals were submitted to the Psychogeriatric Dependency Rating Scale (PDRS). Objective burden was indicated by the weekly hours of care and absence from work.	A total of 27% of variance of care time could be explained by the following: being the caregiver of the spouse, not having respite care, being employed, patient's functional dependence, lack of specialized medical care, caregiver's education, and patients' neuropsychiatric disorders. Every five points added to the PDRS score led to an increase of 54% in caregivers' risk of loss of eight or more hours/week of work.
Kraijo H, van Exel J, Brouwer W, 2015. Holland⁽³¹31 Kraijo H, van Exel J, Brouwer W. The perseverance time of informal carers for people with dementia: results of a two-year longitudinal follow-up study. BMC Nurs [Internet]. 2015[cited 2016 Apr 22];14:56. Available from: https://www.ncbi.nlm.nih.gov/pubmed/26549986 https://www.ncbi.nlm.nih.gov/pubmed/2654... ⁾	To investigate for how long informal caregivers of elderly with AD can be expected to persevere to provide care.	A total of 198 caregivers of 198 patients with AD were included in a longitudinal cohort study. MMSE, ADAS, and measures of ADL functionality and neuropsychiatric disorders were applied to patients. Zarit's burden inventory, the measure of suffering due to patients' neuropsychiatric symptoms, the RUD and one item about perseverance time (PT) were applied to caregivers.	After one year, 74 elderly individuals were still living at home, and after two years, 44. The remaining ones were either institutionalized or dead. Care time at the baseline was 3.2 days/week and 38.6 hours/month. The more severe the AD, the longer the time of care and supervision. There was a low correlation between burden and PT: 6.1% with PT > 1 week and < 1 month; 14.65%, PT > 1 month and < 6 months; 19.7%, PT < 6 months and < 1 year, and 39.9%, PT = 2 years. After one year, 37.4% still provided care at home; after two years, 22.2%.
Hajek A, Brettschneider C, Ernst A, Posselt T, Wiese B, Prokein J, et al., 2016. Germany⁽³²32 Hajek A, Brettschneider C, Ernst A, Posselt T, Wiese B, Prokein J, et al. Longitudinal predictors of informal and formal caregiving time in community-dwelling dementia patients. Soc Psychiatry Psychiatr Epidemiol [Internet]. 2016[cited 2017 May 1];51(4):607-16. Available from: https://www.ncbi.nlm.nih.gov/pubmed/26498751 https://www.ncbi.nlm.nih.gov/pubmed/2649... ⁾	To investigate the predictors of time of informal and formal care provided to patients living in the community, considering the severity of AD.	The caregiving time for 126 community-dwelling AD patients was assessed at 6-month intervals, in a 1.5 years of longitudinal follow-up from the German Study on Ageing, Cognition and Dementia in Primary Care Patients (Age-CoDe). Formal and informal caregivers responded to CDR (Clinical Dementia Rating), GDS (Global Deterioration Scale) and RUD. Patients responded to the MMSE, Barthel Index and Lawton and Brody's scale of IADL. Formal care time included nursing outpatient care, home care, shopping and the presence of a private caregiver.	A total of 43 patients had very mild dementia; 55, mild; and 28, from moderate to severe. The mean time of informal care was 2.3 h ± 3.4 hours/day, and that of formal care, 1.2 h ± 2.4 hours/day. The severity of AD, being a spouse and patients' age affected the total time of informal care. The severity of AD did not affect formal care time. Spouses spent more time in all categories of informal care, except for appointment and financial management.
Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N. 2016. Holland⁽³³33 Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N. Subjective burden among spousal and adult-child informal caregivers of older adults: results from a longitudinal cohort study. BMC Geriatr [Internet]. 2016[cited 2017 May 1];16(1):208. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27923347 https://www.ncbi.nlm.nih.gov/pubmed/2792... ⁾	Investigate (a) the extent to which spousal andadult-child caregivers of highly dependent older Dutch differ in their subjective burden, and (b) the correlates of overall subjectiveburden and multiple subjective burden dimensions amongspousal and adult-child caregivers at one time pointand over a 12-month period.	A longitudinal study was conducted. At the baseline, 356 elderly individuals and their caregivers (43% of which were spouses and 57%, sons and daughters) were selected among 505 participants from 25 services; 158 caregivers (44%, spouses) participated of the follow-up. Burden was indicated by the caregivers scores in the Care-Related Quality of Life Instrument (CarerQoL-7D); number of hours of household care, personal care and practical care, and health conditions of care recipients (multimorbidity, functional limitations in IADL and BADL, and cognitive problems).	According to the two measures, spouses scored higher for perceived burden, and reported more mental and physical health problems associated with care in ADL than sons/daughters. The worse the health conditions of those receiving care, the higher the burden perceived by spouses. Among sons/daughters, the perceived burden was associated with longer care time. Subjective burden at follow-up was mainly explained by baseline subjective burden.
Vaingankar JA, Chong SA, Abdin E, Picco L, Jeyagurunathan A, Zhang Y, et al., 2016. Singapor e⁽³⁴34 Vaingankar JA, Chong SA, Abdin E, Picco L, Jeyagurunathan A, Zhang Y, et al. Care participation and burden among informal caregivers of older adults with care needs and associations with dementia. Int Psychogeriatr [Internet]. 2016[cited 2017 May 1];28(2):221-31. Available from: https://www.ncbi.nlm.nih.gov/pubmed/ 26478530 https://www.ncbi.nlm.nih.gov/pubmed/ 264... ⁾	To investigate the participation of care, needs and burden of care in a cohort of informal caregivers of the elderly. To describe the participation of informal caregivers of elderly with any care needs; to investigate differences in time and type of care according to dementia status of the care receivers, and to examine correlates of caregivers' burden.	In a population-based study carried out in Singapore, 693 pairs of elderly individuals aged 60 to 100 years, having any care needs, and their informal caregivers aged 21 to 88 years, were interviewed during a cross-sectional national survey. Data on behavioral and psychological symptoms of dementia, dementia diagnosis, care needs, and socio-demographic characteristics of the care receivers were obtained. The Zarit's burden scale was applied to caregivers. Time use was assessed with questions about how many hours per day (from < 1 to 2 hours) were spent on care in eight ADLs.

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[1] CORRESPONDING AUTHOR: Elcyana Bezerra Carvalho. E-mail: elcyana.b@gmail.com