indesign chapter 3 3.pdf · (2008) ‘quality of life’, ‘mental health’, ‘physical...

Chapter 3Personalized caregiver support; e�ectiveness of psychosocial interventions in subgroups of carers of people with dementia (review).

Van Mierlo LD, Meiland FJM, Van der Roest HG, Dröes RM. Personalised caregiver support: e�ectiveness of psychosocial

interventions in subgroups of caregivers of people with dementia. International Journal of Geriatric Psychiatry. 2012; 27,1-14.

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60

Abstract

Objective: Insight into the characteristics of caregivers for whom psychosocial interventions are effective is important for care practice. Until now no systematic reviews were conducted into the effectiveness of psychosocial interventions for caregiver subgroups.

Methods: To gain insight into this relationship between caregiver subgroups and intervention outcomes, a first review study was done. This study reviews the personal characteristics of caregivers of people with dementia for whom psychosocial interventions were effective.

Results: Electronic databases and key articles were searched for reviews on psychosocial interventions for caregivers studies published between January 1990 and February 2008. Based on these reviews, twenty-six studies met the inclusion criteria (i.e. having positive outcomes described in subgroups). Most positive effects were found in caregivers of people with a diagnosis of ‘dementia not otherwise specified’ and in the subgroup of female caregivers. Examples of outcomes were decreased depression and improved self-efficacy.

Conclusions: This study gives a first overview of successful psychosocial interventions in subgroups of caregivers of people with dementia. It makes clear that until now, relatively little research has been done into subgroups of these caregivers. It also suggests that more research is needed to better understand which psychosocial interventions are effective for specific subgroups of caregivers of people with dementia.

PERSONALIZED SUPPORT FOR SUBGROUPS OF CARERS

61

Introduction

It is estimated that 35.6 million people have dementia today, and that the number of people affected will almost double every 20 years to 65.7 million in 2030 and 115.4 million people in 2050 (World Alzheimer Report, 2009). Almost all people with dementia are cared for by people in their social network such as family, friends, neighbours, the so-called informal carers. Because of the increase of people with dementia, the number of informal caregivers will increase as well in the coming decades. Caring for people with dementia is a burdensome task and is associated with physical and psychosocial problems. For some decades, research has shown that caregivers of people with dementia visit healthcare professionals more frequently, have more health problems, use more medication than other people of their age, and also frequently suffer from social isolation (Eagles et al., 1987; Pot et al., 1997; Schoenmakers et al., 2002; Butler, 2008). Effective support can prevent caregivers from getting overburdened. However, the available healthcare services that aim to support people with dementia and their informal caregivers are not expected to rise at the same rate as the expected increase in patients and carers. This anticipated discrepancy needs to be resolved. Caregiver needs often include the unmet need for information for support with regard to symptoms of dementia, for social contact and for health monitoring and perceived safety (Lauriks et al., 2007). Unmet needs can lead to many negative outcomes such as overburden and illness for caregivers (Dröes et al., 2004b). Effective and efficient support, tailored to individual (unmet) needs, therefore seems highly relevant. To be able to provide caregivers of people with dementia with the appropriate care and tailored support, more detailed knowledge is needed on the effectiveness of care interventions in (subgroups of) caregivers. Such knowledge will be very useful for healthcare professionals who offer support to caregivers of people with dementia, as it will help them provide tailored advice and effective care that is attuned to the needs of individual carers. In a recent review, Van Mierlo et al. (2010), investigated which characteristics of persons with dementia or their living situation were related to positive outcomes of psychosocial interventions. This provided a unique overview in which caregivers of people with dementia, as well as professional healthcarers, can find effective interventions for specific subgroups of people with dementia. The review reported on in this article was conducted to obtain a comparableoverview of effective interventions for subgroups of caregivers of people with dementia.


61

Introduction

It is estimated that 35.6 million people have dementia today, and that the number of people affected will almost double every 20 years to 65.7 million in 2030 and 115.4 million people in 2050 (World Alzheimer Report, 2009). Almost all people with dementia are cared for by people in their social network such as family, friends, neighbours, the so-called informal carers. Because of the increase of people with dementia, the number of informal caregivers will increase as well in the coming decades. Caring for people with dementia is a burdensome task and is associated with physical and psychosocial problems. For some decades, research has shown that caregivers of people with dementia visit healthcare professionals more frequently, have more health problems, use more medication than other people of their age, and also frequently suffer from social isolation (Eagles et al., 1987; Pot et al., 1997; Schoenmakers et al., 2002; Butler, 2008). Effective support can prevent caregivers from getting overburdened. However, the available healthcare services that aim to support people with dementia and their informal caregivers are not expected to rise at the same rate as the expected increase in patients and carers. This anticipated discrepancy needs to be resolved. Caregiver needs often include the unmet need for information for support with regard to symptoms of dementia, for social contact and for health monitoring and perceived safety (Lauriks et al., 2007). Unmet needs can lead to many negative outcomes such as overburden and illness for caregivers (Dröes et al., 2004b). Effective and efficient support, tailored to individual (unmet) needs, therefore seems highly relevant. To be able to provide caregivers of people with dementia with the appropriate care and tailored support, more detailed knowledge is needed on the effectiveness of care interventions in (subgroups of) caregivers. Such knowledge will be very useful for healthcare professionals who offer support to caregivers of people with dementia, as it will help them provide tailored advice and effective care that is attuned to the needs of individual carers. In a recent review, Van Mierlo et al. (2010), investigated which characteristics of persons with dementia or their living situation were related to positive outcomes of psychosocial interventions. This provided a unique overview in which caregivers of people with dementia, as well as professional healthcarers, can find effective interventions for specific subgroups of people with dementia. The review reported on in this article was conducted to obtain a comparableoverview of effective interventions for subgroups of caregivers of people with dementia.

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62

To gain insight into the characteristics that are related to effective psychosocial intervention outcomes this literature review focuses on the research question: Which specific characteristics of caregivers of persons with dementia or their situations are related to positive outcomes of individual psychosocial interventions (in this study defined as all non-pharmacological interventions that intend to support caregivers of people with dementia in accomplishing their caregiver task and improving their quality of life) for caregivers?

Methods

Literature search procedureTo investigate our research question, we performed a literature study. This study was restricted to nonpharmacological interventions. We started by searching the electronic databases of PubMed, PsycINFO and Cinahl. The inclusion criteria were: studies that report on the effectiveness of care and welfare services for caregivers of people with dementia, as well as on the relation between outcomes and personal characteristics of caregivers. An intervention was considered effective when it had a statistically significant positive outcome for (subgroups of) caregivers of people with dementia.The search was limited to reviews published between January 1990 and February 2008. Consequently, studies from before 1990 that were included in those reviews were included in our study as well. To structure the literature search, we used three categories: ‘dementia’, ‘informal caregiver’ and ‘effective care and support’. For each category a search strategy was developed based on keywords (Mesh, Thesaurus and Tree, e.g. ‘Dementia’, ‘Social Support’, ‘Quality of Life’, ‘Caregivers’) and free text words (e.g. outcome studies, dementia, caregiver).

Search results and analysis The initial search in the three databases resulted in a total of 269 reviews of intervention studies, of which 32 met the inclusion criteria. These reviews were further analysed and resulted in a total of 53 studies that described effective care and welfare interventions for caregivers of people with dementia. The most recent review that we found was published in 2007, including publications until December 2005. As a consequence, studies that were published later were not included in our review.The abstracts were double-checked by two researchers. Abstracts that caused disagreement between the researchers were discussed. Disagreement could occur


63

when it was not fully clear from the abstract whether the inclusion criteria were met, e.g.: the abstract lacked details on the characteristics of subgroups. In those cases the full text article was considered and discussed to decide on inclusion or exclusion.Twenty-six studies met the inclusion criteria and described effective interventions for (subgroups of) caregivers of people with dementia. Relevant studies were described on the content of the intervention, the personal characteristics of the caregivers and the effects found. As most studies did not report on effect sizes, these were therefore not included in the description of the results. These aspects were described in text and summarised in an overview table. Based on the studies found, several categories of outcome measures were distinguished for eachsubgroup.

Results

Outcome measuresThe interventions under study were aimed at many different outcome measures. We clustered them into six categories based on research by Van der Roest et al.(2008) ‘Quality of Life’, ‘Mental Health’, ‘Physical Functioning’, ‘Competence and Self-efficacy’, ‘Burden’ and ‘Attitude towards people with dementia’ (Table 1 (a to e), first column).

Outcomes of effective interventions for caregivers of people with dementiaTable 1(a to e)(column 2) shows an overview of the interventions for caregivers of people with dementia, as well as the characteristics of the caregivers that proved to be related to positive outcomes within one or more outcome categories. Due to the variety of described caregiver characteristics in the studies within ‘dementia not otherwise specified’ and ‘Alzheimer’s Disease’, the subcategories (e.g. gender, relationship) within these categories are not identical.Most positive intervention effects were found in the subgroup female caregivers of people with a diagnosis ‘dementia not otherwise specified’. The positive effects were most often related to the outcome categories ‘competence and selfefficacy’ (n=33) and ‘mental health’ (n=24). The fewest positive effects were reported on outcome categories ‘quality of life’ (n=6) and ‘attitude towards person with dementia’ (n=6). A total of seven studies reported significant effects based on post hoc analyses or group comparisons (Vernooij-Dassen et al., 1995; Hepburn et al., 2001; Coon et al., 2003; Eisdorfer et al., 2003; Gitlin et al., 2003; Mahoney et al.,


63

when it was not fully clear from the abstract whether the inclusion criteria were met, e.g.: the abstract lacked details on the characteristics of subgroups. In those cases the full text article was considered and discussed to decide on inclusion or exclusion.Twenty-six studies met the inclusion criteria and described effective interventions for (subgroups of) caregivers of people with dementia. Relevant studies were described on the content of the intervention, the personal characteristics of the caregivers and the effects found. As most studies did not report on effect sizes, these were therefore not included in the description of the results. These aspects were described in text and summarised in an overview table. Based on the studies found, several categories of outcome measures were distinguished for eachsubgroup.

Results

Outcome measuresThe interventions under study were aimed at many different outcome measures. We clustered them into six categories based on research by Van der Roest et al.(2008) ‘Quality of Life’, ‘Mental Health’, ‘Physical Functioning’, ‘Competence and Self-efficacy’, ‘Burden’ and ‘Attitude towards people with dementia’ (Table 1 (a to e), first column).

Outcomes of effective interventions for caregivers of people with dementiaTable 1(a to e)(column 2) shows an overview of the interventions for caregivers of people with dementia, as well as the characteristics of the caregivers that proved to be related to positive outcomes within one or more outcome categories. Due to the variety of described caregiver characteristics in the studies within ‘dementia not otherwise specified’ and ‘Alzheimer’s Disease’, the subcategories (e.g. gender, relationship) within these categories are not identical.Most positive intervention effects were found in the subgroup female caregivers of people with a diagnosis ‘dementia not otherwise specified’. The positive effects were most often related to the outcome categories ‘competence and selfefficacy’ (n=33) and ‘mental health’ (n=24). The fewest positive effects were reported on outcome categories ‘quality of life’ (n=6) and ‘attitude towards person with dementia’ (n=6). A total of seven studies reported significant effects based on post hoc analyses or group comparisons (Vernooij-Dassen et al., 1995; Hepburn et al., 2001; Coon et al., 2003; Eisdorfer et al., 2003; Gitlin et al., 2003; Mahoney et al.,

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64

2003; Dröes et al., 2006). Nineteen studies reported significant effects from a priori hypotheses.

How to use the tableThe numbers in the row of a specific intervention correspond with the numbers in the results section and in the reference list of the publications in which positive effects of the intervention in subgroups were described. Subgroup characteristics described in the studies are indicated at the top of the columns. A row contains more or fewer reference numbers depending on the amount of characteristics related to the outcome measures found in the studies.

Quality of lifeFive studies described interventions that succeeded in improving quality of life in subgroups of caregivers of people with dementia. These interventions were: a home-environment skill building programme (Gitlin et al., 2003 [11]), an education and support programme (Millan-Calenti et al., 2000 [12]), an individualised intervention focusing on information and coping (Moniz-Cook et al., 2008[13]), Telecare (Strawn et al., 1998 [14]) and attending a memory clinic (LoGiudice et al., 1999 [15]). The following personal characteristics of caregivers were related to positive intervention effects: gender, current care use, type and severity of dementia.


65

Type

of D

emen

tia ►

Rela

tion

CaregiverNo care use at baselineFemale GenderMale genderOlder woman (49-82 yrs)Spouses

Wifes High levels of depression Low levels of depression Reduced perceived stressLess subjective carer burdenHigh Anger Expression Low- mid levels mastery (Pearlin < 3.6)Positive beliefs carer's roleCaregivers who feel lonelyProbable dementiaMild to moderate dementiaModerate to severe behavioral problems

Living at homeAlzheimers DiseaseCarers of early stage ADCarers of mild to moderate AD

Spouses Moderate to severe ADL dependencyHigh AnxietyLiving at homeAt least 1 relative living in the areaCuban American husbands and daughters

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65

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CHAPTER 3

66

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CHAPTER 3

70

Type

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71

Com

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MC

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71

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reas

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ange

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tility

CHAPTER 3

72

Type

of D

emen

tia ►

Rela

tion





Effe

cts ▼

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rven

tion▼

Impr

oved

ove

rall

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73

Type

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e 1f

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73

Type

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Dec

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ple

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men

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er S

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ory

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give

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Tabl

e 1f

. Cha

ract

eris

tics

of c

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e w

ith d

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tia re

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rven

tion

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omes

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tude

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with

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entia

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tal H

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ase

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not

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ise

spec

ified

Seve

rity

Gen

der

Rela

tion

CHAPTER 3

74

Mental healthThirteen studies described interventions that succeeded in improving mental health in subgroups of caregivers of people with dementia. These interventions were: Minnesota Family Workshop (Hepburn et al., 2001 [16]), an individualised multicomponent treatment programme (Romero and Wenz, 2001 [17]), structural ecosystems therapy+computer-telephone system (Eisdorfer et al., 2003 [18]), an exercise programme (King et al., 2002 [19]), an anger and depression management class (Coon et al., 2003 [10]), a nursing intervention using the Progressively Lowered Stress Threshold Model (Buckwalter et al., 1999 [20]), a telephone support system (Mahoney et al., 2003 [21]), psycho-educational support (Cummings et al., 1998 [22]), individual and family counselling (Mittelman et al., 1993 [23]), Behaviour Therapy-Pleasant Events (Teri et al., 1997 [24]; Teri, 1994 [25]), a day care programme (Wells et al., 1990 [26]) and cognitive behavioural therapy (Akkerman and Ostwald, 2004 [27]). The following personal characteristics of caregivers were related to positive intervention effects: gender, presence of depression, presence of mental health problems, type and severity of dementia and presence of anxiety in person with dementia.

Competence and self-efficacyTwelve studies described interventions that succeeded to improve competence and self-efficacy in subgroups of caregivers of people with dementia. These interventions were: an anger and depression management class (Coon et al., 2003 [10]), Alzheimer’s Caregiver Support Online (Glueckauf et al., 2004 [28]), a home-environment skill building programme (Gitlin et al., 2003 [11]; Huang et al., 2003 [29]), Meeting centres support programme (Dröes et al., 2004a [7]), carer training to implement behaviour management programmes (Bourgeois et al., 1997 [31]), Minnesota Family Workshop (Hepburn et al., 2001 [16]), a support and counselling programme (Mittelman et al., 1993 [23]), Telecare (Strawn et al., 1998 [14]), psycho-educational support (Cummings et al., 1998 [22]; Zanetti et al., 1998 [32]) and emotional and practical support (Vernooij-Dassen et al., 1995 [33]). The following personal characteristics of caregivers were related to positive interventioneffects: gender, relationship with person with dementia, presence of depression, presence of mental health problems, type and severity of dementia, ADL dependency and presence of behavioural problems in person with dementia and person with dementia living in the community.

BurdenTwelve studies described interventions that succeeded in decreasing burden in subgroups of caregivers of people with dementia. These interventions were: an


75

education and support programme (Millan-Calenti et al., 2000 [12]), Minnesota Family Workshop (Hepburn et al., 2001 [16]), Alzheimer’s Caregiver Support Online (Glueckauf et al., 2004 [28]), home–environment skill building programme (Gitlin et al., 2003 [11]), psycho-educational support group (Zanetti et al., 1998 [32]; Cummings et al., 1998 [22]), individual and family counselling (Mittelman et al., 1993 [23]), an exercise programme and nutritional education (King et al., 2002 [19]), a nursing intervention using the Progressively Lowered Stress Threshold Model (Buckwalter et al., 1999 [20]), an anger and depression management class (Coon et al., 2003 [10]), an individualised multicomponent treatment programme (Romero and Wenz, 2001 [17]), a telephone support system (Mahoney et al., 2003 [21]) and video respite therapy (Lund et al., 1995 [35]). The following characteristics of caregivers were related to positive intervention effects: gender, relationship with the person with dementia, presence of mental health problems, type and severity of dementia and dependency on ADL of person with dementia.

Physical functioningFour studies described interventions that succeeded in improving physical functioning in subgroups of caregivers of people with dementia. These interventions were: an education and support programme (Millan-Calenti et al., 2000 [12]), cognitive behavioural therapy (Akkerman and Ostwald, 2004 [27]) an exercise programme and nutritional education (King et al., 2002 [19]), a nursing intervention using the Progressively Lowered Stress Threshold Model (Buckwalter et al., 1999 [20]). The following personal characteristics of caregivers were related to positive intervention effects; type of dementia, gender, presence of mental health problems and presence of anxiety in person with dementia.

Attitude towards person with dementiaFour studies described interventions that succeeded in improving the attitude towards the person with dementia for subgroups of their caregivers. These interventions were: a home-environment skill building programme (Gitlin et al., 2003 [11]), a psycho-educational support group (Ostwald et al., 1999 [34]), individual and family counselling (Mittelman et al., 1993 [23]) and attending a memory clinic (LoGiudice et al., 1999 [15]). The following personal characteristics of caregivers were related to positive intervention effects: gender, relationship with the person with dementia, the severity of dementia and presence of behavioural problems in the person with dementia.


75

education and support programme (Millan-Calenti et al., 2000 [12]), Minnesota Family Workshop (Hepburn et al., 2001 [16]), Alzheimer’s Caregiver Support Online (Glueckauf et al., 2004 [28]), home–environment skill building programme (Gitlin et al., 2003 [11]), psycho-educational support group (Zanetti et al., 1998 [32]; Cummings et al., 1998 [22]), individual and family counselling (Mittelman et al., 1993 [23]), an exercise programme and nutritional education (King et al., 2002 [19]), a nursing intervention using the Progressively Lowered Stress Threshold Model (Buckwalter et al., 1999 [20]), an anger and depression management class (Coon et al., 2003 [10]), an individualised multicomponent treatment programme (Romero and Wenz, 2001 [17]), a telephone support system (Mahoney et al., 2003 [21]) and video respite therapy (Lund et al., 1995 [35]). The following characteristics of caregivers were related to positive intervention effects: gender, relationship with the person with dementia, presence of mental health problems, type and severity of dementia and dependency on ADL of person with dementia.

Physical functioningFour studies described interventions that succeeded in improving physical functioning in subgroups of caregivers of people with dementia. These interventions were: an education and support programme (Millan-Calenti et al., 2000 [12]), cognitive behavioural therapy (Akkerman and Ostwald, 2004 [27]) an exercise programme and nutritional education (King et al., 2002 [19]), a nursing intervention using the Progressively Lowered Stress Threshold Model (Buckwalter et al., 1999 [20]). The following personal characteristics of caregivers were related to positive intervention effects; type of dementia, gender, presence of mental health problems and presence of anxiety in person with dementia.

Attitude towards person with dementiaFour studies described interventions that succeeded in improving the attitude towards the person with dementia for subgroups of their caregivers. These interventions were: a home-environment skill building programme (Gitlin et al., 2003 [11]), a psycho-educational support group (Ostwald et al., 1999 [34]), individual and family counselling (Mittelman et al., 1993 [23]) and attending a memory clinic (LoGiudice et al., 1999 [15]). The following personal characteristics of caregivers were related to positive intervention effects: gender, relationship with the person with dementia, the severity of dementia and presence of behavioural problems in the person with dementia.

CHAPTER 3

76

Discussion

In this study we tried to gain more insight into characteristics of caregivers of people with dementia that may predict positive effects of individual care and welfare interventions. We traced 26 studies that reported on the effectiveness of psychosocial interventions within subgroups of caregivers of people with dementia. We found various personal characteristics of caregivers related to positive outcomes of interventions. For example, having mental health problems, characteristics of the person with dementia they care for (e.g. type and severity of dementia, presence of behavioural problems and living situation) and the relationship with the person with dementia were related to the outcome of several interventions, such as decreased caregiver burden and increased competence. While Smits et al. (2007) emphasised that attention needs to be paid to the different needs of subgroups of people with dementia, this review confirms that attention for the needs of subgroups of caregivers is equally justified. Moreover, in order to be able to supply demand-directed care more efficiently and effectively, dementia care should not only focus on the diversity of care and support needs of different caregiver groups (for instance, caregivers that are depressed), but also on which programmes are most effective for which subgroups. Characteristics that were frequently found to be related to positive intervention effects for caregivers are: gender of caregiver and type and severity of dementia of the person they care for. Characteristics that until now were investigated in only few studies, but also seem to be associated with positive intervention outcomes are: Being a spouse or wife, presence of mental health problems in the caregiver, person with dementia living in the community or not, no care use at baseline, ADL dependency of person with dementia, presence of anxiety or behavioural problems in the person with dementia. Overall, we were able in this review to provide a first unique overview of the characteristics of caregivers of people with dementia that are related to positive intervention outcomes. This knowledge will help healthcare professionals to refer caregivers with specific characteristics to suitable interventions that might be effective for their experienced problems, though further research on subgroups is needed to confirm the predictive value of the traced characteristics.The caregiver characteristics we found in the studies were often not based on subgroup analysis, but deduced from the description of the sample under study. As positive intervention outcomes in these samples were found on a group level, we concluded that the described characteristics of the samples were related to the intervention outcomes. However, as a consequence of this method the precise relationship between individual characteristics and intervention outcomes remains


77

unclear. Furthermore, characteristics of the sample not explicitly mentioned may also be related to the positive intervention outcomes. More research is needed to investigate whether the relationships between individual characteristics and outcome measures actually exist. Comparisons of subgroups with different characteristics might provide insight into which characteristics are most predictive of success of the intervention. The characteristics we traced based on sample descriptions could also prove not to be very distinctive. Subgroup characteristics that seem related to intervention outcomes may not be unique, as other characteristics could also turn out to be related to those outcomes. For instance, many studies showed relationships between several personal characteristics and the intervention outcomes burden and mental health. This seems to imply that, in terms of burden and mental health, many subgroups of caregivers benefit from support independently of the intervention offered. This makes it hard to identify which interventions are more effective in particular subgroups. Relatively few studies found a relationship between caregiver characteristics and the intervention outcomes quality of life and physical functioning. This means that either these relations require more investigation (QoL has been used as an outcome measure more frequently only in the past decade), or that the characteristics that predict improved quality of life and physical functioning are more distinct. This should be investigated further, and the importance of identifying distinctive subgroups related to positive outcomes of interventions should be acknowledged. Some of the studies showed stronger relationships, as they compared subgroups within their sample and found effective outcomes for certain subgroups (e.g. Hepburn et al., 2001; Coon et al., 2003; Gitlin et al., 2003). These studies allow us to draw stronger conclusions about the relationships between those characteristics and intervention outcomes.Our results can be used in different ways. Based on the information provided in this paper (see Table 1), healthcare professionals can refer caregivers from a specific subgroup, who for instance experiences mental health problems, to an intervention that is most likely to be effective. Second, healthcare professionals that practice a certain intervention can use the table to identify subgroups that could benefit in particular from that intervention. There were several limitations to our research. Some of the studies described more than one characteristic of caregivers and persons with dementia that in combination proved related to positive intervention outcomes (Gitlin et al., 2003; Dröes et al., 2006). In these cases each characteristic was considered (inde-pendently) related to the effective intervention outcome(s). In reality, however, we do not know if this is the case. We used scientific electronic databases to trace relevant reviews for our study and subsequently studied the reference lists of all relevant reviews and papers. A


77

unclear. Furthermore, characteristics of the sample not explicitly mentioned may also be related to the positive intervention outcomes. More research is needed to investigate whether the relationships between individual characteristics and outcome measures actually exist. Comparisons of subgroups with different characteristics might provide insight into which characteristics are most predictive of success of the intervention. The characteristics we traced based on sample descriptions could also prove not to be very distinctive. Subgroup characteristics that seem related to intervention outcomes may not be unique, as other characteristics could also turn out to be related to those outcomes. For instance, many studies showed relationships between several personal characteristics and the intervention outcomes burden and mental health. This seems to imply that, in terms of burden and mental health, many subgroups of caregivers benefit from support independently of the intervention offered. This makes it hard to identify which interventions are more effective in particular subgroups. Relatively few studies found a relationship between caregiver characteristics and the intervention outcomes quality of life and physical functioning. This means that either these relations require more investigation (QoL has been used as an outcome measure more frequently only in the past decade), or that the characteristics that predict improved quality of life and physical functioning are more distinct. This should be investigated further, and the importance of identifying distinctive subgroups related to positive outcomes of interventions should be acknowledged. Some of the studies showed stronger relationships, as they compared subgroups within their sample and found effective outcomes for certain subgroups (e.g. Hepburn et al., 2001; Coon et al., 2003; Gitlin et al., 2003). These studies allow us to draw stronger conclusions about the relationships between those characteristics and intervention outcomes.Our results can be used in different ways. Based on the information provided in this paper (see Table 1), healthcare professionals can refer caregivers from a specific subgroup, who for instance experiences mental health problems, to an intervention that is most likely to be effective. Second, healthcare professionals that practice a certain intervention can use the table to identify subgroups that could benefit in particular from that intervention. There were several limitations to our research. Some of the studies described more than one characteristic of caregivers and persons with dementia that in combination proved related to positive intervention outcomes (Gitlin et al., 2003; Dröes et al., 2006). In these cases each characteristic was considered (inde-pendently) related to the effective intervention outcome(s). In reality, however, we do not know if this is the case. We used scientific electronic databases to trace relevant reviews for our study and subsequently studied the reference lists of all relevant reviews and papers. A

CHAPTER 3

78

limitation of our search method is that the most recent review we found was published in 2007, including publications until December 2005. Therefore, relevant studies published after 2005 are not described in this overview (e.g. Graff et al., 2006; Chu et al., 2010; Gitlin et al., 2010). This overview is a first step to help and support professionals in advising on and providing effective individualised dementia care, although the results of this study also indicate that more research should be conducted into characteristics that have not been studied yet, such as education, ethnic background and socio-economic status. The findings regarding subgroup studies help to identify probable effective interventions for subgroups of caregivers and will therefore help professional caregivers to offer tailored interventions to their individual clients, and provide a rationale for selecting a specific intervention. A limitation for clinical practice is that although a specific intervention might be suitable for an individual caregiver, this intervention may not be available within the region where the caregiver is living. But, this review might also be a stimulus to implement successful interventions for substantial subgroups in regions where they are now lacking.A disadvantage of focusing on (sub)group outcome studies could be that the effectiveness for other individuals is ignored. Another disadvantage of subgroup research is that it requires large samples, which is expensive and therefore often not feasible. In the past, many studies did not aim to investigate relationships between subgroups of caregivers of people with dementia and effective psychosocial interventions, or failed to find relationships because the study sample size was too small. A solution to this problem would be to cluster the data of different studies that describe similar interventions and conduct a meta subgroup analysis on them (Moniz-Cook et al., 2008). However, a precondition would then be that the same intervention period, outcomes and measuring instruments are used for comparability. Ultimately, studying possible subgroup effects in relation to intervention outcomes will provide more insight into the effectiveness of specific psychosocial interventions in different subgroups of caregivers of people with dementia in different stages of the disease. The findings could be translated into a care model that can guide healthcare professionals towards successful interventions for individual clients. The results of this review already lead to a better understanding of which care and welfare interventions are related to specific subgroups of caregivers of people with dementia. Using this knowledge will contribute to more customised care and welfare services for the target group, and ultimately to a better quality of life for informal caregiver of people with dementia.


79

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