Predicting caregiver burden in informal caregivers caring for persons with dementia living at home

Abstract

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers’ negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers’ negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.

Keywords

caregiver burden care provision dementia home care quality of care

Introduction

Informal caregiving for a person with dementia living at home is multidimensional with several factors affecting the caregiving situation and caregiver burden. Informal caregivers (also referred to as simply, ‘caregivers’) are main providers of care and services for older persons with dementia living at home (Ward-Griffin et al., 2012; Wimo & Prince, 2010). Caregivers can have a positive experience of caring for persons with dementia (Bertand, Fredman, & Saczynski, 2006), but they are also at increased risk for stress, depression, burden and other health complications (Schulz & Martire, 2004; Wimo & Prince, 2010). Moreover, they have higher mortality compared with caregivers caring for persons without dementia (Brodaty & Donkin, 2009).

Informal care may be defined as care provided by a spouse, child, other relative, friend, or other, usually with an established social relationship to the care recipient (The OECD Health Project, 2005). Primary caregivers are most often female, such as an adult middle-aged daughter or daughter in law of the care recipient (Knapp et al., 2007; Moise, Schwarzinger, & Um, 2004). Caregivers provide approximately 75% of the care at home for persons with dementia, including help with activities of daily living (ADLs) and finances as well as supervision tasks (Schulz & Martire, 2004). The caregiver may be assisted by formal care in helping the person with dementia with ADLs, or formal care may provide daily care for the person or other forms of support to the caregiver. It has been estimated that, in the early stages of dementia disease, the ratio of informal caregiver time to formal care spent on care (mainly ADLs) for persons with dementia living at home is approximately 3:1 to 4:1 (Bakker et al., 2013; Moise et al., 2004). This time ratio is probably higher in countries with strong family traditions and multigeneration housing (Moise et al., 2004). The dementia disease progresses along the severity continuum from diagnosis to end of life (Moise et al., 2004), which means that caregiving entails change and increase over time.

Previous research has revealed that caregiver burden depends on the characteristics of the caregiver and the person with dementia including the latter’s behavioural symptoms and need of care (Torti, Gwyther, Reed, Friedman, & Schulman, 2004). Burden also depends on the caregivers’ perception of formal care for the person with dementia (Janse, Huijsman, & Fabbricotti, 2014). Further research is needed to identify the factors that affect caregiver burden, involving the caregiver, the person with dementia and formal care, to obtain more knowledge about the complexities of caregiving for persons with dementia.

Caregiver burden can be defined as a multidimensional response that can threaten the caregiver’s physical, psychological and emotional well-being and can thus, affect their functioning in daily life (Brodaty & Donkin, 2009; Zwaanswijk, Peeters, van Beek, Meerveld, & Francke, 2013). Factors, including psychological factors influencing caregiver burden are being female (Kim, Chang, Rose, & Kim, 2009), living with the person with dementia (Conde-Sala, Garre-Olmo, Turró-Garriga, Vilalta-Franch, & López-Pousa, 2010), being an adult child of the person with dementia (Conde-Sala et al., 2010; Kim et al., 2009) and having depressive symptoms (Gallagher et al., 2011; Springate & Tremont, 2014; Yeager, Hyer, Hobbs, & Coyne, 2010). Further factors are use of behavioural disengagement and criticism as coping strategies (Lim, Griva, Goh, Chionh, & Yap, 2011) and high social restrictiveness scores, as well as rejection and anxiety in women (Zawadzki et al., 2011). Caregiver burden can be exacerbated by negative impact of caregiving on the caregivers’ lives (Bleijlevens et al., 2015; Springate & Tremont, 2014), depression (Pillemer, Davis, & Tremont, 2017) and significantly longer time of care, in terms of both months of long-term care and hours of daily care (D’Onofri et al., 2015; Haro et al., 2014) as well as individual caregiver’s perception of unmet needs of the person with dementia and caregiving satisfaction (Park et al., 2017).

Factors in persons with dementia affecting caregiver burden are female gender (Rosdinom, Zarina, Zanariah, Marhani, & Suzaily, 2013) and type of dementia (Boutoleau-Bretonnière, Vercelletto, Volteau, Renou, & Lamy, 2008; Lim et al., 2011) as well as comorbidities, functional and cognitive impairment (Agüera-Ortiz, Frank-García, Gil, & Moreno, 2010; D’Onofri et al., 2015) and quality of life (Andrieu et al., 2016). In addition, if the person with dementia has poor function in ADLs (Kim et al., 2009; Mohamed, Rosenheck, Lyketsos, & Schneider, 2010; Park et al., 2017) or psychotic symptoms paired with poor instrumental ADL functioning (Yeager et al., 2010) the caregiver burden is increased. Care recipient-related factors that predominantly influence caregiver burden are neuropsychiatric symptoms (Conde-Sala et al., 2010; Davis & Tremont, 2007; Kolanowski et al., 2017; Tun, Murman, & Colenda, 2008) and psychological symptoms (Chiao, Wu, & Hsiao, 2015). Caregiver burden has been shown to be higher in caregivers with a history of home care during the previous year (Kim et al., 2009). One study has looked at aspects such as caregivers’ increased satisfaction with formal care if the patient was treated with dignity and respect (Goldberg et al., 2013).

Formal care factors that negatively influence caregiver burden in dementia care have been summarized in previous reviews (Cheng, 2017). Most of the studies reviewed had population sizes ranging from 50 to 800, though three studies had populations exceeding 1000. Regardless of the dementia diagnosis, neuropsychiatric symptoms have been shown to be the most predictive factor of caregiver burden and caregiver depression. Caregiver characteristics as factors of caregiver burden may be divided into three categories: caregiver socio-demographical factors, psychological factors and caregiving-related factors (Chiao et al., 2015).

Caregiver burden is an important reason for nursing home admission of persons with dementia (Afram et al., 2014; Sansoni, Anderson, Varona, & Varela, 2013). Hence, to prevent caregiver burden and enable caregivers to care for the person with dementia at home for as long as possible, it is essential to identify and support the caregivers at risk of burden. To our knowledge, no studies have longitudinally investigated this multidimensional caregiver situation to determine factors associated with and predicting caregiver burden in individuals caring for older persons with dementia at risk of being institutionalized. Further, the present study investigates a large multinational population over time, simultaneously measuring characteristics of the caregiver, the person with dementia and formal care. The knowledge gained may enable professionals and students preparing for careers in the health care and social service field to provide the caregivers with an individualized service, thus decreasing caregiver burden and increasing well-being and quality of life for the caregiver (Prince, Prina, & Guerchet, 2013).

Aims

The primary aim of this study was to investigate factors associated with informal caregiver burden, involving the informal caregiver, the person with dementia and formal care, when caring for older persons with dementia living at home and being at risk of being institutionalized. The secondary aim was to investigate factors predicting increase in burden over three months.

Research approach

This was a multinational cohort study with a three-month follow-up. Participants were from eight European countries: Estonia, Finland, France, Germany, the Netherlands, Sweden, Spain and the United Kingdom. The study formed part of the European project called ‘RightTimePlaceCare’ (part of the EU 7th Framework Programme for Research, contract number 242153), conducted between November 2010 and March 2012. Methods and procedures of the RightTimePlaceCare project were followed in this study without modification (Verbeek et al., 2012).

Altogether 1223 dyads of caregivers and care recipients with dementia were included (Estonia n = 172, Finland n = 182, France n = 175, Germany n = 116, the Netherlands n = 177, Sweden n = 146, Spain n = 174 and the United Kingdom n = 81). Inclusion criteria for caregivers were living together with the person with dementia or visiting them at least twice a month. Inclusion criteria for the person with dementia were age ≥ 65 years, having a primary dementia diagnosis, having a Standardized Mini-Mental State Examination (SMMSE) score ≤24 (Folstein, Folstein & McHugh, 1975; Molloy, Alemayehu, & Roberts, 1991) and living at home with support from the health care and the social service system. The person with dementia should further have been assessed by a formal caregiver, e.g. a registered nurse or a general practitioner, to be at risk for institutionalization within six months (i.e. on the margins of long-term care admission when home care is not enough or when the caregiver is heavily burdened). Data were collected using standardized measurement instruments (Table 1).

Table 1.

Instruments used for data collection, measured factors, items, score ranges, interpretation and handling of missing data.

Instrument and references	Person	Measured factors	Items and score range	Interpretation	Handling of missing data	References for validity and reliability
Zarit Burden Interview (ZBI) (Zarit et al., 1980)	Caregiver	Caregiver strain	22 items in five domains, score range: 0–88	Higher score = higher perceived strain	Mean score if <10% of data were missing	Bachner and O’Rourke (2007) and Hebert, Bravo and Preville (2000)
Resource Utilization in Dementia (RUD) (Wimo, Jönsson, Karlsson, & Winblad, 1998)	Caregiver	Informal care provision	Supervision, personal and instrumental activities in daily living (ADLs); hours per day of caregiving and occasions during the last 30 days of caregiving	Amount of informal care, in hours and days	Imputed data	Wimo and Nordberg (2007)
General Health Questionnaire (GHQ12) (Goldberg, 1972)	Caregiver	Psychological well-being	Score range: 0–36	Higher score = less psychological well-being	Mean score if <10% of data were missing	Goldberg (1978)
EuroQol-5 dimension-3level (EQ-5D-3L), visual analogue scale (EQ-VAS) (TheEuroQolGroup, 1990)	Caregiver	Health related quality of life (QoL)	Five descriptive questions about five health dimensionsScore range: −0.594 to 1Self-rated health, score range: 0–100	Higher score = better health-related QoLHigher score = higher self-rated health state	No total score if one item was missing	Oemar and Oppe (2013)
Standardized Mini-Mental State Examination (SMMSE) (Folstein et al., 1975)	Person with dementia	Cognitive status	20 items, score range: 0–30	Lower score = more cognitive impairment	Not applicable	Molloy et al. (1991)
Charlson Comorbidity Index (CCI) (Charlson, Pompei, Ales, & MacKenzie, 1987)	Person with dementia	Comorbidity	19 possible comorbidities, score range: 0–37	Higher score = a greater risk of dying from comorbid disease(s)	Not applicable	D’Hoore, Bouckaert and Tilquin (1996)
Quality of Life in Alzheimers disease (QoL-AD) (Logsdon, Gibbons, McCurry, & Teri, 1999)	Person with dementia	Quality of life	Score range: 13–52	Higher score = higher quality of life	Mean score if <2 items were missing	Logsdon et al. (2002)
Katz Index of Independence in Activities of Daily Living (Katz-ADLs) (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963)	Person with dementia	Functional status of independency	Performance in the six ADL functions: bathing, dressing, toileting, transferring, continence and feeding, score range: 0–6	Higher score = greater independency in performing ADLs	No missing values imputed. No total score if one item was missing	Wallace and Shelkey (2008)
Neuropsychiatric Inventory (NPI-Q) (Cummings et al., 1994)	Person with dementia and caregiver	Neuropsychiatric symptoms	The NPI contains 12 items covering (1) presence of symptoms during the past four weeks; (2) severity; (3) caregiver distress. Severity score: 0–36; distress score: 0–60	High score presence of more neuropsychiatric symptom or higher caregiver distress	No missing values were imputedNo total score if one item was missing	Kaufer et al. (2000)
Depression in Dementia (CSDD) instrument (Alexopoulos, Abrams, Young, & Shamoian, 1988)	Person with dementia	Depression	The CSDD contains 19 items covering five dimensions, score range: 0–38	Higher score = more depressive symptoms	Mean score if a maximum of three items were missing	Alexopoulos et al. (1988)
Client Interview Instrument (CLINT) - Home Care (Vaarama, 2009)	Caregiver, formal care	Experiences of quality of care at home	The CLINT contains eight dimensions and a total and general score, score range: 9–45	Higher score = lower quality of care	Mean score if a maximum of one item was missing	Beerens et al. (2014)

Outcome measures for caregivers were the caregivers’ answers to the questions in the Zarit Burden Interview (ZBI) (Zarit, Reever, & Bach-Peterson, 1980) one of the most common instruments for assessing caregiver burden (Deeken, Taylor, Mangan, Yabroff, & Ingham, 2003; Zarit, Orr, & Zarit, 1985). The 22-item version as recommended by Bachner and O’Rourke (2007) was used in this study. The caregivers answered all questions in the protocol except for the cognitive test which was completed by the person with dementia. Outcome measures chosen for the person with dementia and caregivers were based on recent models predicting care demands (van Bilsen, Hamers, Groot, & Spreeuwenberg, 2006), institutionalization for persons with dementia (Gaugler, Yu, Krichbaum, & Wyman, 2009; Luppa, Luck, Brahler, Konig, & Riedel-Heller, 2008) and quality of care (Du Moulin, van Haastregt, & Hamers, 2010). Regarding quality of care, the Client Interview Instrument (Vaarama, 2009) for home care was used to measure experiences of formal care and was supplemented by a single question about dementia-specific care services: ‘Do you or does your relative make use of any dementia specific service?’ If the participant responded ‘yes’, they were then asked to rate their satisfaction with this care on a 5-point Likert scale ranging from 1 = ‘very dissatisfied’ to 5 = ‘very satisfied’.

We analysed two different outcomes, the baseline outcome and outcome at three months follow-up, to identify factors that were associated with and influenced change in caregiver burden. The dependent variable, the ZBI score, was dichotomized by using the median baseline value. At baseline, the ZBI scores were dichotomized into ‘0 = no burden’ (0–20; never/rarely) and ‘1 = burden’ (21–88; sometimes/quite frequently/nearly always). At follow-up, the ZBI scores were dichotomized into ‘0 = no increase’ and ‘1 = increase’. The question about formal care regarding ‘satisfaction with dementia-specific care’ was dichotomized into ‘0 = dissatisfied’ (neither satisfied nor dissatisfied/dissatisfied/very dissatisfied) and ‘1 = satisfied’ (satisfied/very satisfied). To compare caregiver burden at baseline and follow-up, bivariate logistic regression was performed for the independent variables regarding the caregiver, the person with dementia and formal care, respectively. A p-value ≤0.05 was regarded as significant. To identify associated and predictive factors for caregiver burden and increase in burden, three multivariate logistic regression models, using the backward selection procedure, were performed for the caregiver, the person with dementia and formal care, respectively.

For the statistical analyses, we used SPSS, version 25.0 (IBM Corp., Armonk, NY, USA). Ethical approval, permission for data collection and informed consent from the caregivers and the person with dementia were obtained from each country’s legal authority for research on human beings: the Ethics Review Committee on Human Research of the University of Tartu, Estonia (196/T-3); the Ethical Committee of the South-West Hospital District in Finland (8/2010); the Comité de Protection des Personnes Sud-Ouest and Outre-Mer, Toulouse (09 202 07) in France; the Nursing Science Ethical Committee University of Witten/Herdecke in Germany; the Medical Ethical Committee of the Academic Hospital Maastricht/Maastricht University, Maastricht in the Netherlands (MEC 10-5-044); the Ethical Committee of the Hospital Clinic of Barcelona, Spain (2010/6031); the Ethical Committee at Lund University, Lund, Sweden (2010/538); and the National Research Ethics Service, North West 5 Research Ethics Committee, Liverpool, the UK (11/NW/0003) (Verbeek et al., 2012).

Results

A total of 75% of the caregivers reported burden at baseline and 44% reported increased burden at follow-up. Caregivers with burden were female (72%) cohabiting with the person with dementia (64%) often were either the wife (26%) or an adult child of the person with dementia (47%) and had a median age of 64 years (median, Q1–Q3 = 55–76). The caregivers were caring for persons of female gender (61%) with dementia symptoms for four years (median, Q1–Q3 = 2–7). The persons with dementia had diagnosis of Alzheimer’s disease (53%), Alzheimer’s disease combined with vascular dementia (17%), dementia not otherwise specified (16%), vascular dementia (6%), other dementias (5%), frontotemporal dementia (2%) and Lewy body dementia (1%).

Informal caregiver factors influencing caregiver burden

The caregivers with burden were providing a great amount of care and supervision time, in terms of hours per day and occasions last 30 days caregiving and experienced higher distress caused by neuropsychiatric symptoms of the person with dementia (Table 2). Health-related quality of life and psychological well-being were reported to be lower among caregivers with burden than among caregivers with no burden. At follow-up, caregivers who experienced increased levels of burden were spending more time (in days) helping with instrumental ADLs, experienced rated lower psychological well-being and higher distress of neuropsychiatric symptoms of the person with dementia compared with caregivers with no increased burden. Factors in the multivariate regression analysis (Table 3) associated with burden and increased burden for the caregiver were care provision regarding practical ADLs (occasions last 30 days), supervision time (hours per day caregiving), lower psychological well-being and higher distress from neuropsychiatric symptoms of the person with dementia. Factors predicting increased burden of the caregiver were care provision regarding practical ADLs (hours per day caregiving) and supervision time (occasions the last 30 days). Further, lower psychological well-being and higher distress from neuropsychiatric symptoms of the person with dementia predicted increased burden for the caregiver.

Table 2.

Informal caregiver-related factors when comparing caregivers with and without burden at baseline and with and without increased in burden at follow-up.

	Burden at baseline					Increase in burden at follow-up
Home careInformal caregivers	No burdenn = 302	Burdenn = 914	OR	95% CI	p-value	No increasen = 577	Increasen = 461	OR	95% CI	p-value
Informal care provision (RUD)
median (Q1; Q3)
PADLs, hours per day	0.5 (0; 2)	2 (1; 4)	1.193	1.121–1.269	<0.001	1 (0;3)	2 (0; 4)	1.013	0.978–1.040	0.329
PADLs, occasions, last 30 days	8 (0; 30)	30 (7; 30)	1.038	1.028–1.048	<0.001	30 (8; 30)	30 (0; 30)	0.994	0.985–1.003	0.216
IADLs, hours per day	2 (1; 3)	3 (2; 4.5)	1.127	1.070–1.186	<0.001	2(1; 4)	2.5 (1; 4)	1.004	0.976–1.033	0.776
IADLs, occasions, last 30 days	30 (8; 30)	30 (20; 30)	1.032	1.019–1.044	<0.001	30 (12; 30)	30 (20; 30)	0.984	0.973–0.996	0.008
Supervision, hours per day	1 (0; 3)	3 (1; 14)	1.081	1.058–1.105	<0.001	2 (0; 12)	2 (0; 12)	1.001	0.986–1.017	0.861
Supervision, occasions, last 30 days	11 (0; 30)	30 (12; 30)	1.041	1.030–1.051	<0.001	30 (0; 30)	30 (1; 30)	0.996	0.987–1.005	0.385
Psychological well-being (GHQ12)
Total score, 0–36	8 (6; 11)	13 (10; 17)	1.374	1.311–1.440	<0.001	12 (9; 16)	12 (8; 16)	1.025	1.003–1.048	0.024
Health related quality of life
EQ-5D-3L, −0.594 to 1	0.9 (0.8; 1.0)	0.8 (0.7; 1.0)	0.083	0.041–0.168	<0.001	0.8 (0.7; 1.0)	0.8 (0.7; 1.0)	0.855	0.536–1.364	0.512
EQ5D (VAS), 0–100	80 (70; 90)	70 (50; 80)	0.968	0.960–0.976	<0.001	70 (55; 80)	70 (60; 80)	0.995	0.989–1.002	0.175
Neuropsychiatric symptoms (NPI)
Distress, 0–60a	4 (1; 9)	11 (5; 19)	1.129	1.104–1.154	<0.001	4 (0; 9)	10 (4; 16)	1.023	1.009 –1.036	0.001

CI: confidence interval; EQ5D: EuroQoL-5 dimensions questionnaire; EQ-5D-3L: EuroQoL-5 dimensions questionnaire with three levels of answers; GHQ12: 12-item General Health Questionnaire; IADLs: instrumental activities of daily living (ADLs); NPI: Neuropsychiatric Inventory; OR: odds ratio; PADLs: personal ADLs; Q1: first quartile; Q3: third quartile; RUD: Resource Utilization in Dementia instrument; VAS: Visual analogue scale.

p ≤ 0.05 was regarded as significant; significant p-values are marked in bold.

Missing cases at baseline = 7, missing cases at follow-up = 17.

Underlining of values indicates a positive result, e.g. 0–36.

^aImputation of data for NPI, distress, n = 1.

Table 3.

Factors associated with informal caregiver burden and predictive factors for increased burden.

		Adjusted R²	OR	95% CI	p-value
Factors associated with caregiver burden
IC factors	Informal care provision (RUD)	0.422
	PADL, occasions last 30 days		1.021	1.008–1.034	0.002
	Supervision hours per day of caregiving		1.045	1.018–1.072	0.001
	Psychological well-being (GHQ12)		1.302	1.239–1.369	<0.001
	Neuropsychiatric symptoms (NPI)
	Distress		1.094	1.067–1.122	<0.001
PwD factors	Quality of life (QoL-AD, proxy)	0.220	0.894	0.864–0.925	<0.001
	Neuropsychiatric symptoms (NPI)
	Severity of symptoms		1.083	1.044–1.124	<0.001
	Depression (CSDD)		1.950	1.007–1.096	0.024
FC factors	Experiences of quality of care (CLINT)	0.021
	Total score		1.072	1.030–1.114	<0.001
Predictive factors for increased burden
IC factors	Informal care provision (RUD)	0.298
	PADL hours per day caregiving		1.119	1.039–1.206	0.003
	Supervision occasions last 30 days		1.017	1.004–1.031	0.011
	Psychological well-being (GHQ12)		1.226	1.164–1.292	<0.001
	Neuropsychiatric symptoms (NPI)
	Distress		1.056	1.029–1.083	<0.001
PwD factors	Reduced cognition (SMMSE)	0.180	0.966	0.939–0.995	0.020
	Quality of life (QoL-AD, proxy)		0.930	0.898–0.964	<0.001
	Neuropsychiatric symptoms (NPI)
	Severity of symptoms		1.049	1.004–1.096	0.031
	Depression (Cornell)		1.080	1.024–1.139	0.005
FC factors	Experiences of quality of care (CLINT)	0.043
	Total score		1.114	1.062–1.167	<0.001

CI: confidence interval; CLINT: Client Interview Instrument – Home Care; EQ-5D-3L: EuroQoL-5 dimensions questionnaire with three levels of answers; FC: formal care; GHQ12: 12-item General Health Questionnaire; IC: informal caregiver; NPI: Neuropsychiatric Inventory; OR: odds ratio; PADLs: personal activities of daily living (ADLs); PwD: person with dementia; Qol-AD: quality of life in Alzheimer’s disease; RUD: Resource Utilization in Dementia instrument; SMMSE: Standardized Mini-Mental State Examination.

p ≤ 0.05 was regarded as significant; significant p-values are marked in bold.

Factors in persons with dementia influencing caregiver burden

Caregivers who experienced burden cared for persons with dementia with higher comorbidity, lower cognitive function and less functional ability in ADLs (Table 4). Further, the person with dementia they cared for often had lower caregiver-rated quality of life and more severe neuropsychiatric symptoms and symptoms of depression compared with persons cared for by caregivers with no burden. Factors affecting increased burden in caregivers from baseline to follow-up were caring for a person with dementia with lower caregiver-rated quality of life, more neuropsychiatric symptoms and symptoms of depression. Factors associated with burden and predicting increased burden were lower rated quality of life, severe neuropsychiatric symptoms and depression of the person with dementia (Table 3). Another factor predicting caregiver burden was reduced cognitive function in the person with dementia.

Table 4.

Care recipient-associated factors when comparing informal caregivers with and without burden at baseline and with and without increased in burden at follow-up.

Home care	Burden at baseline					Increase in burden at follow-up
Persons with dementia^a	No burdenn = 302	Burdenn = 914	OR	95% CI	p-value	No increasen = 577	Increasen = 461	OR	95% CI	p-value
Comorbidity (CCI), median (Q1; Q3), 0–37	1 (1; 2)	2 (1; 3)	1.165	1.047–1.296	0.005	2 (1; 3)	2 (1; 3)	1.085	0.992–1.187	0.073
Cognitive function (SMMSE), 0–30	17 (13; 20)	15 (9; 19)	0.953	0.932–0.975	<0.001	17 (13; 21)	15 (10; 19)	0.993	0.974–1.013	0.514
Quality of life (QoL-AD, proxy), 13–52	31 (27; 34)	27 (24; 30)	0.864	0.839–0.889	<0.001	31 (27; 34)	27 (23; 30)	0.959	0.935–0.983	0.001
Activities of daily living (Katz ADL), 0–6	4 (2; 6)	3 (2; 5)	0.850	0.792–0.911	<0.001	4 (2; 5)	3 (1; 5)	0.964	0.904–1.027	0.256
Neuropsychiatric symptoms (NPI)b
Severity, 0–36	5 (2; 9)	9 (6; 15)	1.140	1.110–1.171	<0.001	5 (2; 9)	8 (4; 14)	1.043	1.023–1.064	<0.001
Depression in dementia (CSDD), 0–38	4 (2; 8)	8 (4; 13)	1.156	1.119–1.193	<0.001	3 (1; 7)	7 (4; 11)	1.031	1.008–1.054	0.007

CCI: Charlson Comorbidity Index; CI: confidence interval; CSDD: Cornell Scale for Depression in Dementia; Katz-ADLs: Katz Index of Independence in Activities of Daily Living; NPI: Neuropsychiatric Inventory; OR: odds ratio; Q1: first quartile; Q3: third quartile; SMMSE: Standardized Mini-Mental State Examination.

p ≤ 0.05 was regarded as significant; significant p-values are marked in bold.

Missing cases at baseline = 7; missing cases at follow-up = 17.

Underlining of values indicates a positive result, e.g. 0–36.

^aA total of 168 persons with dementia had moved to a nursing home at follow-up time point.

^bImputation of data for NPI, severity, n = 1.

Factors of formal care influencing caregiver burden

Total score and general satisfaction with quality of care affected the perception of increased burden in caregivers at follow-up (Table 5). In addition, caregivers were less likely to be burdened if they were satisfied with dementia-specific care. In the multivariate analyses, a factor predicting increased burden for the caregiver was the total score for quality of care (Table 3).

Table 5.

Formal care-related factors when comparing informal caregivers with and without burden at baseline and with and without increased in burden at follow-up.

Home care	Burden at baseline					Increase in burden at follow-up
Formal carea	No burdenn = 302	Burdenn = 914	OR	95% CI	p-value	No increasen = 577	Increasen = 461	OR	95% CI	p-value
Quality of care at home (CLINT) median (Q1; Q3)
Total score, 9–45	14.1 (12.0; 17.1)	16.0 (13.0; 18.1)	1.072	1.030–1.114	0.001	14.3 (11.9; 17.0)	14.9 (12.0; 17.9)	1.038	1.004–1.074	0.029
General satisfaction, 1–5b	2.0 (1.0; 2.0)c	2.0 (1.0; 2.0)d	1.258	1.046–1.514	0.015	2.0 (1.0; 2.0)^e	2.0 (1.0; 2.0)^f	1.185	1.007–1.394	0.040
Satisfaction with dementia-specific service, %
Satisfied, 1–5	82	70	0.503	0.313–0.809	0.005	74	71	1.246	0.862–1.803	0.242

CI: confidence interval; CLINT: Client Interview Instrument – Home Care; OR: odds ratio; Q1: first quartile; Q3: third quartile.

p ≤ 0.05 was regarded as significant; significant p-values are marked in bold.

Underlining of values indicates a positive result, e.g. for CLINT 9–45 and 1–5.

Missing cases at baseline = 7; missing cases at follow-up = 17.

^aA total of 168 persons with dementia had moved to a nursing home at follow-up time point.

^bImputation of data for the CLINT Home Care baseline: General satisfaction n = 3.

^cMean 1.66, standard deviation (SD) = 0.74.

^dMean 1.79, SD = 0.78.

^eMean 1.62, SD = 0.71.

^fMean 1.79, SD = 0.75.

Discussion

Informal caregiving for an older person with dementia living at home is a complex phenomenon. It entails continuous responsibility around the clock, with a gradual increase in time and effort spent on caregiving, influenced by factors involving the caregiver, the person with dementia and formal care. One factor related to the caregiver and predicting increased risk of caregiver burden identified in this study was lower experienced psychological well-being in caregivers, indicating that there is a need to identify modifiable associated factors over time that affect caregiver burden. Further, we found that caregiver burden was associated with increased informal care provision (e.g. help with instrumental and practical ADLs) and increased supervision time in the last 30 days. A heavy workload in caregiving implies increased risk for burden for the caregiver, negatively affecting caregivers’ psychological well-being, which has been shown to be the largest differences between caregivers and non-caregivers (Pinquart & Sörensen, 2003). In our study, supervision during the last 30 days was a factor of importance. A greater amount of caregiver supervision of the care recipient implied significantly increased the risk for caregiver burden. This was similar to another study, reporting that supervision of a person with dementia was the largest part of informal care (Bakker et al., 2013). Supervision time was associated with caregiver burden also in Haro et al. (2014). Supervision of the person with dementia to prevent the person from hurting him or herself can be viewed as a dementia-specific factor that distinguishes dementia caregivers from non-dementia caregivers. As decreased psychological well-being in this study was a predictive risk factor for increased burden, professionals need to recognize the heavy workload of caregivers regarding ADLs and supervision time when caring for a person with dementia living at home. Individualized support to caregivers regarding help with supervision of ADLs, such as respite care, may relieve caregiver burden.

Caregiver burden might further relate to the degree of the person with dementia’s cognitive impairment and in particularly to the occurrence of neuropsychiatric symptoms. In this study, we showed that increased severity of neuropsychiatric symptoms in the person with dementia was a predictive risk factor for increased caregiver burden and distress. During the course of the dementia disease, neuropsychiatric symptoms occur in approximately 90% of persons with dementia (Lyketsos et al., 2002). Both frequency and severity of neuropsychiatric symptoms have been shown to affect quality of life for the caregiver and the person with dementia (Finkel, 2000). In the present study, risk for caregiver burden was associated with impaired cognitive function, lower quality of life and more severe neuropsychiatric symptoms in the person with dementia. Similar to our study, previous studies of person with dementia and their caregivers identified neuropsychiatric symptoms in the care recipient as one factor associated with caregiver burden (de Labra et al., 2015; Kamiya, Sakurai, Ogama, Maki, & Toba, 2014; Taemeeyapradit, Udomittipong, & Tepparak, 2014). Among neuropsychiatric symptoms, agitation and aggression cause the highest burden for caregivers (Taemeeyapradit et al., 2014). Health and social care workers evaluate and measure neuropsychiatric symptoms in persons with dementia as part of the ongoing dementia care they provide. However, it is important that health professionals need to be aware of the relationship between the severity of neuropsychiatric symptoms and caregiver burden and distress. Further studies in this area are needed to evaluate appropriate care and services for both the caregiver and the care recipient.

As the dementia disease progresses, the independence of the person with dementia is affected by the need for supplementary care and support from formal care. In our study, a predictive risk factor for increased caregiver burden was overall negative experience of formal care and service. To our knowledge, few studies have focused on dementia caregivers’ experiences of quality of care at home regarding their satisfaction with dementia-specific care and caregiver burden when caring for a person with dementia living at home. There are previous studies reporting on caregiver perception of hospital care. One previous study of frail older persons and their caregivers reported that satisfaction with care increased if the care was provided according to the wishes of the care recipient (Janse et al., 2014). In the present study, factors associated with risk for caregiver burden were the caregivers’ experiences of quality of formal care. Factors in formal care might be related to how the caregiver perceives the formal care retrieved by a relative (Park et al., 2017). Health care and social service professionals should have knowledge about factors that increase caregiver burden. This will enable them to be proactive and provide the caregiver with an individualized service and continuity of staff to relieve caregiver burden and increase the caregivers’ ability to continue caring for a person with dementia living at home.

The main strength of this study was our ability to investigate several risk factors associated with caregiver burden and factors predicting increased burden in a large cohort study, both cross-sectionally and longitudinally. Furthermore, this study was performed across eight European countries, which enhances generalizability of the results. The follow-up period was short, but this was not necessarily a disadvantage because the person with dementia was at risk of institutionalization within six months, as assessed by professional caregivers. This may imply that the caregivers were heavily burdened and that increased burden could be expected. Apart from socio-demographic data, such as age and gender, associated and predictive factors were investigated for all involved parties, namely the caregivers, the person with dementia and formal care, both at baseline and at follow-up, which is another strength of this study.

In this study, caregivers used the Quality of Life in Alzheimer’s Disease scale to rate quality of life for the person with dementia. It is well documented that caregivers rate the quality of life of the person with dementia lower than the person with dementia do themselves (Andrieu et al., 2016; Logsdon, Gibbons, McCurry, & Teri, 2002; Thorgrimsen et al., 2003), which can be assumed to have an impact on caregiver burden. In this study this proxy-rated quality of life may have resulted in caregiver burden which may have been preventable if the person with dementia had rated their own quality of life. It is possible to get self-ratings of quality of life from persons with dementia even if they score low, ≤ 3, on the SMMSE (Pinquart & Sörensen, 2003). Therefore, informing the caregiver about how the person with dementia experiences their own quality of life might decrease the caregivers’ perceived burden.

Limitations of this study were that no data were collected on the duration of daily caregiving at home, which may have had an impact on our results regarding caregiver burden. Caregiving duration has been suggested elsewhere to be related to the amount of perceived burden (Brodaty & Donkin, 2009). Moreover, this study focused on the total sample of caregivers from a European perspective. Sampling methods may have differed between countries, due to different health care and social service systems, and this may have influenced the result. A previous study within the RightTimePlaceCare project (Bleijlevens et al., 2015) showed differences in caregiver burden assessed using the ZBI, when comparing caregivers of persons with dementia living at home with caregivers of persons with dementia who had recently moved into institutional long-term care. Not only did caregiver burden decrease after the transition to institutional care, but there were large differences between countries. However, to promote internal validity, the same procedures and guidelines were used by all the countries participating in the RightTimePlaceCare project. For external validity, this study is intended to represent countries in northern, southern, west, east and central Europe. Country samples ranged from n = 81 to n = 182, which was estimated to be sufficient for the analysis (Verbeek et al., 2012). At baseline, the ZBI scores were dichotomized into ‘0 = no burden’ (0–20) and ‘1 = burden’ (21–88) and at follow-up into ‘0 = no increase’ and ‘1 = increase’. To ensure that this classification was adequate we conducted a sensitivity analysis where we changed the limit to deterioration by two steps (point difference). When these analyses were conducted and the odds ratio changed by more than 10%, the change was always away from the null. Therefore, we believe that any potential incorrect classification of the outcome may only have led to an underestimation of the risk. Because of the large total sample (n = 1223), the bivariate analysis at baseline demonstrated large differences in several factor values that were statistically significant. For quality of care, where values were similar, we calculated mean values to show differences. In addition, the 95% confidence interval was narrow for many factors, suggesting high precision.

Conclusions

In this large, longitudinal multinational cohort study, we identified factors relating to the person with dementia, the caregiver and formal care, associated with and predicting caregiver burden when caring for a person with dementia at risk of institutionalization. Caregiver burden is a multidimensional response that can threaten caregivers’ well-being and their functioning in daily life through several factors. Predicting factors for caregiver burden involved low ratings of psychological well-being of the caregiver, as well as caregiver distress and increased severity of neuropsychiatric symptoms in the person with dementia and the caregivers’ negative perception of the quality of care and services. Future studies should focus on the effect of interventions on modifiable factors predicting perceived caregiver burden, such as support to the informal carer, psychosocial support to prevent increased neuropsychiatric symptoms and quality of care. Professionals and students preparing for careers in the health care and social service field need knowledge about this multidimensional response and, furthermore, need to know what factors affect and increase caregiver burden. This knowledge will better equip them to promote caregivers’ ability to continue caring for a person with dementia living at home. This might lead to better adapted health care and social service systems in dementia care at home.

Footnotes

Acknowledgements

We are grateful for the informal caregivers participating in the RightTimePlaceCare project, for making this study possible. We are also grateful for the statistical advice given by Anna Axmon, Associate Professor, Occupational and Environmental Medicine, Lund University, Lund, Sweden.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The RightTimePlaceCare study is supported by a grant from the European Commission within the 7th Framework Programme (contract number 242153).

Connie Lethin is a registered nurse and postdoc at Lund University, Sweden. Her research focus is nursing, specifically regarding dementia, the health care and social service system, technician for people with dementia and caregivers, and digital education for care staff. She also works clinically with people with dementia and caregivers at the Memory Clinic, Skåne University Hospital, Sweden and teaches undergraduate and master students at Lund University, Department of Health Sciences, Sweden. She has received grants from the European Commission.

Professor Helena Leino-Kilpi, RN, PhD, head of the Department of Nursing Science, University of Turku, Finland and nurse director, Turku University Hospital and internationally known expert in nursing and health sciences, Honorary Doctor in the University of Klaipeda, (Lithuania), a fellow of European Academy of Nursing Science and a visiting professor in the University of Dublin Trinity College (Ireland). Her research focus is health care ethics, health services research, nursing education. She has published more than 300 scientific, referee-based publications.

Michel HC Bleijlevens is a movement scientist, has a background as physiotherapist and is an assistant professor at the Department of Health Services Research of Maastricht University. He is affiliated with the Living Lab in Ageing and Long-Term Care. His research focuses on effective nursing care (e.g. physical restraint reduction and prevention, and enhancing physical activity) and on the organization of care process (e.g. best practices in dementia care and innovations in the care for older people).

Astrid Stephan, PhD, RN, is a research fellow at the Institute for Health and Nursing Science at Martin Luther University Halle-Wittenberg, Germany. She has worked as a research fellow and project manager of the 7th Framework European project RightTimePlaceCare at Witten/Herdecke University, Germany, the coordinating partner of the project. Astrid is also a research fellow at Heinrich-Heine-University Düsseldorf, Germany in the project Actifcare, timely access to dementia care services.

Professor Maria S Martin, MD, PhD, is head of the Alzheimer’s Acute Unit in the Department of Geriatric Medicine at the Toulouse University Hospital in France. She is involved in therapeutic research focusing on neuropsychiatric symptoms at the Alzheimer Disease Clinical Research Center of the Gerontopole. Currently she is principal or co-investigator of research programmes focusing on Alzheimer’s disease and related neuropsychiatric symptoms. She has received grants from the French Ministry of Health Grant and the European Commission.

Karin Nilsson, PhD, RN, has been working as a nurse at the Memory Clinic, Skåne University Hospital, Lund, Sweden. She is a medical research assistant at MultiPark: Multidisciplinary research focused on Parkinson’s disease, Department of Psychiatry at Lund University, Lund, Sweden.

Christer Nilsson, MD, PhD, is consultant neurologist at Skåne University Hospital and an associate professor in neuroscience at Lund University, Sweden. He represents Sweden in the European Academy of Neurology’s Panel on dementia. His research interests include the natural history and diagnostic markers for frontotemporal dementia and atypical parkinsonian disorders.

Adelaida Zabalegui, PhD, RN, FEAN, is currently an associate professor at Barcelona University and vice director of Nursing at Hospital Clinic of Barcelona (HCB). Prior CEO of Nursing HCB, dean of Nursing School at the Universitat Internacional de Catalunya, and assistant director of Nursing at New York City Bellevue Hospital. Accreditation in advanced research and Group coordinator for consolidated research, ‘Care for Dependent Elderly’. Board member of the European Academy of Nursing Science and Nursing Now campaign. Editor of Nursing journal, Spanish edition.

Staffan Karlsson completed his PhD at Lund University in 2008, became an associate professor in geriatric nursing 2015 and professor in nursing 2017. He has provided research in Swedish National study on Aging and Care and the European RightTimePlaceCare dementia care study. Professor Karlsson is teaching in nursing, mostly on advanced and research level. He is director of Health Lab and coordinates a doctoral programme at Halmstad University. Professor Karlsson has published more than 30 papers in reputed journals.

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Predicting caregiver burden in informal caregivers caring for persons with dementia living at home – A follow-up cohort study

Abstract

Keywords

Introduction

Aims

Research approach

Results

Informal caregiver factors influencing caregiver burden

Factors in persons with dementia influencing caregiver burden

Factors of formal care influencing caregiver burden

Discussion

Conclusions

Footnotes

Acknowledgements

Declaration of Conflicting Interests

Funding

References