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VU Research Portal

Needs of people living with dementia and their informal caregivers for activating

interventions

van 't Leven, M.A.

2020

document version

Publisher's PDF, also known as Version of record

Link to publication in VU Research Portal

citation for published version (APA)

van 't Leven, M. A. (2020). Needs of people living with dementia and their informal caregivers for activating

interventions.

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CHAPTER 2 –

Dyadic interventions for

community-dwelling people

with dementia and their family

caregivers: a systematic review

Published as:

Van’t Leven N, Prick AE, Groenewoud JH, Roelofs P, de Lange J, Pot AM. Dyadic interventions for community-dwelling people with dementia and their family caregivers: a systematic review. International Psychogeriatrics, 2013; 25(10),1581-603. doi: 10.1017/S1041610213000860. Epub 2013 Jul 24.

Abstract

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Background

In this review, we study the effects of dyadic psychosocial interventions focused on community-dwelling people with dementia and their family caregivers, and the relationship of the effects with intervention components with programs.

Methods

A search from January 2005 to January 2012 led to 613 hits, which we reviewed against our inclusion criteria. We added studies from 1992 to 2005 reviewed by Smits et al.12 We assessed the methodological quality of 41 programs with the

Cochrane criteria and two items of the Oxford Centre of Evidence-based Medicine guidelines.

Results

Studies of moderate to high quality concerning 20 different dyadic psychosocial programs for people with dementia and caregivers were included. Nineteen of these programs show significant effects on the patient with dementia, the care- giver, or both. Due to differences in the programs and the studies, this study does not provide an unequivocal answer about which programs are most effective. Programs with intervention components that actively train one or more specific functional domains for the person with dementia and/or the caregiver seem to have a beneficial impact on that domain, although there are exceptions. Reasons can be found in the program itself, the implementation of the programme, and the study design.

Conclusion

Dyadic psychosocial programs are effective, but the outcomes for the person with dementia and the caregiver vary. More attention is needed for matching the targeted functional domains, intervention components, and delivery characteristics of a program with the needs of the person with dementia and the family caregiver.

Introduction

Most people with dementia live in their own homes in the community. They need support and care in everyday life, and they are dependent on informal care, mainly provided by spouses and adult children, but also by neighbors or friends. Although caregiving is satisfying for most informal caregivers because they care about their

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loved ones, it is also very burdensome.1-3 People with dementia and their care-

givers have to cope with impaired daily functioning and changing roles, often with a negative impact on their health condition.3-5 Many psychosocial supporting

interventions for people with dementia and their caregivers have been developed in the last decades.6,7 Evidence for the effectiveness of these interventions, being

even more effective than pharmacological therapies, has been published.8-10 In

recent years, psychosocial interventions have focused on both the person with dementia and the informal caregiver (also referred to as the “dyad” in this paper). Directing the dyad is seen as most effective because of the mutual influence between the person with dementia and the informal caregiver. For instance, behavioral symptoms of dementia may increase the caregiver burden; caregiver management strategies will influence both the behavior of the person with demen-tia and the feelings of competence and mood of the caregiver.11 The effects of

psychosocial intervention programs have been studied in a previous review that included publications up to 2005.12 The authors found that psychosocial

interven-tion programs may contribute to the quality of life of both members of the dyad, and may decrease caregivers’ mental health problems. The effects on most other functional and behavioral domains, however, are moderate or inconsistent. Some interventions led to statistically significant effects in subgroups only. Currently, a wide range of psychosocial programs are offered to people with dementia and their caregivers. Some of these have been evaluated in randomized controlled trials (RCTs). The purpose of our current study was to update Smits et al.’s systematic review, and to provide the current best evidence about psychosocial programs for the dyads that involve face-to-face contact between professional caregivers and both the patient and the caregiver. We describe the program characteristics and the measured effects on both members of the dyads. These outcomes are related to the intervention components of the programs.

Method

Search strategy

We searched the databases Psychinfo, Embase, Medline, and Cinahl for single studies and reviews, and we searched the Cochrane Library for systematic reviews. Since we built on the review of Smits et al. (2007), our search covered publications from January 2005 to January 2012. We used the same search string with the following keywords: (Alzheimer* OR dementia) AND (caregiv* OR family members) AND (support program OR training OR counselling OR intervention) AND (effec*

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OR effic*), as well as Mesh or Emtree terms to ensure that the search was as complete as possible.13-15 Any systematic reviews we found were searched for

mention of additional single RCTs involving psychosocial interventions (Figure 1).

Inclusion criteria

We included effect studies evaluating dyadic psychosocial interventions for both older people with dementia living in the community and their caregivers. A broad definition of psychosocial interventions was used. Interventions that encompass other treatment components than psychosocial ones - such as environmental modifications and exercise – were also included. The interventions had to involve face-to-face contact between a care professional and the person with dementia as well as the informal caregiver and the same care professional. In addition, the interventions had to target psychosocial outcomes, improving mental health or well-being. In contrast with Smits et al., we included only RCTs in our current review. We excluded RCTs involving respite interventions, and technological devices, as well as cost-effectiveness studies, studies among nursing home resi-dents and integrated studies where results could not be related to a specific intervention or program (Table 1).

Study participants Study design Psychosocial intervention Language Study aim Pooled data Inclusion criteria

People with dementia 65 years old or more.

People with dementia and their informal caregivers living in the community, not a nursing home.

Effect study: randomized controlled trial.

Intervention aimed at reducing or preventing the mental health decline of one or both members of the dyad, including the areas of cognition, activities, daily living skills, competence, and interpersonal relationships. Face-to-face contact between care professional and person with demen-tia, and between the same care professional and caregiver.

English, Dutch, German, and French. Exclusion criteria

Cost-effectiveness.

Combination of intervention studies.

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Selection of studies

First, one reviewer (NL) screened the titles against the inclusion criteria and discarded obviously irrelevant publications. Second, two pairs of reviewers (NL/ AEP and NL/JG) independently assessed the abstracts of the remaining publicati-ons and the additional studies found in the reviews. Any discrepancies were resolved by consensus of all three reviewers. Finally, NL/AEP and NL/JG examined potentially relevant articles in full text.

Figure 1 Flow chart of identification of studies

Search A:

(Alzheimer* OR dement*) AND (caregiv* OR family members) AND (support program OR training OR counseling OR intervention) AND (effec* OR effic*) Search B:

Same keywords, but we selected Emtree or Mesh terms as were given in the database

January 2005 – January 2012 Duplicates excluded:

Single studies: 608; reviews: 43 651

We searched references of 43 reviews +5

Title showed that study obviously did

not meet inclusion criteria: - 398 Abstract made clear that study did

not meet inclusion criteria: - 173

Exclusion:

8 Studies were not randomized controlled trials; 3 Cost-effective studies of programs were already included;

3 Studies did not combine interventions; 2 Pooled studies

1 Study was a follow-up study -17

Smits et al.

Effects of combined intervention programs for people with dementia living at home and their caregivers: a systematic review

Search – 2005: + 25

Single studies: 608

Single studies: 613

Studies with full text: 42

Studies 2005 – 2012: 25

Studies 1992 – 2005: 25

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Quality assessment

The two pairs of reviewers (NL/AEP and NL/JG) independently assessed all publi- cations (that is, those resulting from the current search and any additional ones included in Smits et al.’s review) for methodological quality by using the Cochrane rating criteria for RCTs.14 The items “blinding of participants” and “blinding of

therapists” were not scored because blinding is not feasible for the type of inter-vention studied. We added the following two items from the Oxford Centre of Evidence-based Medicine guidelines to the Cochrane criteria (http://www.cebm. net): the specific components of the intervention should be described, and the experimental and control groups must each have a minimum of 30 participants (Table 2).16 If information was missing, we contacted the corresponding authors

of the publication for such information.

Data analysis

We used several strategies for data analysis to do justice to the variety of programs and studies. First, we described the intervention programs by delivery characteris-tics (e.g., dose, mode of delivery, group vs. individual, adaptability/control), intervention components, and targeted functional domains.17 The intensity of

contact in the program was rated on a scale ranging from 1 to 4, with 1 represen-ting “1–2 sessions” and 4 represenrepresen-ting “more than 10 sessions”.10 Second, for all

outcomes of interest, we assessed the strength of the body of evidence using the Grades of Recommendation, Assessment, Development and Evaluation Working Group (GRADE) approach, as recommended in the Cochrane Handbook 5.1.14 The

strongest evidence comes from one or more good-quality RCTs. Limitations in the design suggesting bias may warrant downgrading the quality of the evidence of the RCT to moderate or even lower. We assessed the quality of the body of evidence as “low”, “moderate” or “high” for each outcome category. If the data warranted it, we quantitatively compared studies for the same targeted psychosocial outcome with the Review Manager (software version 5.1).14 The standardized mean

diffe-rence was used to compare effect sizes if the studies used different instruments to measure the outcome of interest. A random effects model analysis was applied for the statistical heterogeneity of the studies. Data obtained after intervention (or at 12 months for the programs that lasted one year or more) were used for this analysis. Pooled estimates were not calculated because of the clinical and statitical heterogeneity between the studies.

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Columns 1-7: Cochrane criteria and

columns I, II: Oxford Centre of Evidence–based Medicine Guideline for assessing methodological quality 2012-2005 Jansen et al., 201131 Clare et al., 201132

Chien & Lee, 201133

Carbonneau et al., 201134 Bakker et al., 201135 McCurry et al., 201136* McCurry et al., 201037 McCurry et al., 200538 Logsdon et al., 201039* Logsdon et al., 200640

Gitlin et al., 2010A22#

Gitlin et al., 2010B23 Neely et al., 200941 Eloniemi-Sulkava et al., 200942 Gitlin et al., 200821 Dias et al., 200843 Onor et al., 200744 Callahan et al., 200645 Dröes et al., 200646 Voigt-Radloff et al., 201120# Graff et al., 200729* Graff et al., 200619 Onder et al., 200547 Martin-Cook et al., 200548 Hepburn et al., 200549 W a s a ll o ca ti o n r a n d o m iz e d ? W a s r a n d o m iz a ti o n p ro ce d u re a d e q u a te an d t ran sp ar e n t? W a s d a ta c o ll e ct io n b li n d e d (i n d e p e n d e n t a ss es so r) ? W e re b a se li n e c h a ra ct e ris ti cs o f st u d y g ro u p s c o m p a ra b le ? W e re f o ll o w -u p d a ta a v a il a b le a n d w e re d ro p -o u ts d e sc ri b e d ? i W e re d a ta f o r a ll r e sp o n d e n ts a n a ly ze d i n t h e g ro u p o f r a n d o m iz a ti o n ? W a s i n te n ti o n -t o -t re a t d a ta a n a ly ze d ? W e re e xp e ri m e n ta l a n d c o n tr o l g ro u p s t re a te d t h e s a m e w a y e xc e p t fo r t h e i n te rv e n ti o n ? W a s a d e ta il e d d e sc ri p ti o n o f t h e in te rve n ti o n g ive n ? W e re t h e e ff e ct s o n a t l e a st 3 0 pa ti e n ts a sse sse d ? In clu sio n P ro g ram 1 + + + + + + + + + + + + + + + + + + -+ + + + + + 2 + + ? ? + + ? + ? ? + + -+ + + ? + -+ + + + ? + 3 + + + ? -+ ? + ? ? + + -+ + ? + -+ + + + ? -4 + + + + + + ? -+ + + + + ? ? + ? -+ + + + ? + -5 + + + + + + ? -+ + + + + + + + + + -+ + + + -+ 6 + ? + + + + + + + + + + + + + ? + + + + + + + + + 7 + + + + + + + + + + + + + + + + + + + + + + + + + I + + + + + + -+ + + + + + + + + + + + + + + + + + II + -+ -+ + + -+ -+ + -+ + + -+ -+ + + + -+ + -+ -+ + -+ -+ + -+ + + -+ -+ + + + -+ 1 2 3 4 5 6 6 7 8 9 10 11 11 11 12 13 >> Criteria

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Table 2 Quality assessment of studies meeting the inclusion criteria

Columns 1-7: Cochrane criteria and

Columns I, II: Oxford Centre of Evidence–based Medicine Guideline for assessing methodological quality 2005-1992 Berger et al., 200450

Dröes et al., 2004a51*

Dröes et al., 2004b52 Dröes et al., 200053 Gitlin et al., 200354# Gitlin et al., 200155 Teri et al., 200356 Romero&Wenz, 200257 Eloniemi-Sulkava et al., 200158 Quayhagen&Quayhagen, 200159 Chu et al., 200060 Aupperle&Coyne, 200061 Ostwald et al., 199962 Logiuduce et al, 199963 Miller et al., 199964* Newcomer et al., 199965 Yordi et al., 199766 Moniz-Cook et al., 199867

Riordan & Bennett, 199868

Teri et al., 199769 Brodaty et al., 199770* Brodaty&Gresham, 198971 Hinchcliffe et al., 199572 Vernooij-Dassen et al., 199573* Vernooij-Dassen, 199374 W a s a ll o ca ti o n r a n d o m iz e d ? W a s r a n d o m iz a ti o n p ro ce d u re a d e q u a te an d t ran sp ar e n t? W a s d a ta c o ll e ct io n b li n d e d (i n d e p e n d e n t a ss es so r) ? W e re b a se li n e c h a ra ct e ris ti cs o f st u d y g ro u p s c o m p a ra b le ? W e re f o ll o w -u p d a ta a v a il a b le a n d w e re d ro p -o u ts d e sc ri b e d ? i W e re d a ta f o r a ll r e sp o n d e n ts a n a ly ze d i n t h e g ro u p o f r a n d o m iz a ti o n ? W a s i n te n ti o n -t o -t re a t d a ta a n a ly ze d ? W e re e xp e ri m e n ta l a n d c o n tr o l g ro u p s t re a te d t h e s a m e w a y e xc e p t fo r t h e i n te rv e n ti o n ? W a s a d e ta il e d d e sc ri p ti o n o f t h e in te rve n ti o n g ive n ? W e re t h e e ff e ct s o n a t l e a st 3 0 pa ti e n ts a sse sse d ? In clu sio n P ro g ram 1 Criteria -+ + + -+ + + -+ + + -+ + + + + 2 + + + + + + -+ ? ? -? + + + + -? -? + 3 ? + + ? ? + + ? ? ? ? -+ ? -? ? + ? + 4 + -+ + + -+ + + + + + + + + + ? + ? + 5 + + + + + + + -+ ? ? + + + -+ + + ? + 6 + + + + + + -? + + + + + + + + + + + ? + 7 + + + + + + -+ + + + + + + + + + + + ? + I + + + + + + + + + + + + + + + + + + -II -+ + + -+ -+ -+ -+ -+ -+ + + -+ -+ -+ -+ -+ -14 15 16 17 18 19 20 >>

Notes: Criterium 5; Were follow-up data for a sufficient proportion of all included patients available and were dropouts described? (loss of 20% for short-term follow-up and 30% for long-term follow-up (>6 months)).

+Low risk, - high risk, ~not applicable, ? no information given

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Results

Literature search and quality assessment

For the period 2005–2012, the search strategy led to 608 single studies and five additional studies in the reviews. After the inclusion and exclusion criteria were applied, 25 publications remained. Smits et al. included 25 publications from the period 1992 to 2005.12 Therefore in total 50 publications were judged on

methodo-logical quality (Figure 1).

These 50 publications concerned 41 intervention programs. Table 2 shows the outcomes for the methodological quality criteria per study and the final judgment for inclusion. Finally, 20 dyadic psychosocial programs studied in 23 RCTs were included in this review. Thus, three RCTs were replication studies of intervention programs that were already studied in an earlier RCT.

Program characteristics

Table 3 shows the characteristics of each program (the numbers in square brackets in the text below correspond with the program numbers in Table 3).

On the basis of the delivery characteristics, programs can be classified in following three categories:

1. Short-period, intensive programs, consisting of six to ten home visits [six programs: 2, 4a, 4b, 5, 6a, 6b, 8, 9] or group sessions [four programs: 1, 3, 7, 10] during a period of five weeks to six months with scheduled topics. All these programs explicitly target both members of the dyad.

2. Long-lasting programs, that is, case management up to 2 years, with home visits and telephone contact [six programs: 11, 13, 14, 15, 16, 17] or in combination with a group session [one program: 12]. The intervention components of these programs primarily target the caregiver, and to a lesser extent the person with dementia.

3. Other programs with temporary hospitalization [three programs: 18,19,20]. The Integrative Reactivation and Rehabilitation (IRR) program involves hospi-talization of the person with dementia for at least 13 weeks and limited supervision or training of the caregiver [18]. The supporting program and the training program include residence for both members of the dyad for ten days, with the focus on both [19,20]. (Numbers of short-period programs are written in standard font, long-lasting programs in italics, and other programs are underlined.

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Most programs consist of multiple treatment components, including information, training for activities of daily life (ADL), walking or exercise, and environmental adaptations for the person with dementia; and information, psycho-education, skills training, and coping strategies for the caregiver. Targeted functional domains include behavioral problems, cognitive functioning, mood, independence in daily activities, sleep, and quality of life of the person with dementia; and mood, burden, competence, and quality of life of the caregiver. The intervention targets of two programs, the Reality Orientation Program [15] and the Sleep-Supporting Interven-tion [2], involve one single funcInterven-tional domain. The other programs target two or more functional domains for change. Some programs aim at reducing the time to institutionalization [12,16,17, 19,20].

All 20 programs claim to tailor their interventions to the dyad’s needs. Eight of the 20 programs start with a needs assessment for the caregiver, and some programs also assess the needs of the person with dementia, using an interview or structured observation, followed by individual goal setting [1,2,4,6,8,11,12,18]. In contrast, the other 12 programs immediately start with treatment sessions and tailor the content to the clients during the program.

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>> D e m e n ti a F a m il y C a re P ro g ra m f o r h o m e -r e si di n g p e rs o n s w it h d em en ti a D F CP (C h ie n & L e e, 2 01 1 3 3 ) N ig h t-ti m e In so m n ia Tr e a tm e n t a n d E d u ca ti o n i n A lz h e im er ’s D is e a se N IT E (M cC u rr y e t a l. , 2 01 1 36) E a rl y-St a g e M e m o ry L o ss S u pp or t G ro u p s (L o g sd o n e t a l. 2 0 10 39) 1 2 3 6 m o n th s 4 H V s f o r n e e d s a ss e ss m e n t (w e e k ly ), 1 0 G S s m a x. (b i-w e e k ly ) (2 -3 ) 8 w e e k s 6 H V s o f 6 0 m in s e ac h (3) 9 w e e k s 9 G S s o f 9 0 m in s e a ch f o r ca re g iv e rs a n d p e rs o n s w it h d e m e n ti a , p a rt ly se p a ra te d d u ri n g th e s e ss io n (3) C a se m a n a g e r so ci a l w or ke r Pro fe ss io n a l w it h m a st e r de g re e le ve l Pro fe ss io n a l w it h m a st e r de g re e le ve l CG mil d t o m o d e rat e P D -CG m il d P D -CG m il d P D: n o n e C G: Healt h st a tu s, Q u a li ty o f l if e P D: Slee p -wa k e a ctiv it y C G: Distr e ss w it h n o ct u rn a l b e h a vi or s P D: Qua li ty o f l if e H ea lt h st a tu s M ood C G: Qua li ty o f l if e M ood St re ss - N e e d s a ss e ss m e n t - E n vi ro n m e n ta l a d a p ta ti o n s a n d m e m o ry ai d s - In d iv id u a l sle e p ing pl a n w it h - W a lk in g - Li gh t-e xp o sur e - In for m a ti on - D e ve lo p in g st ra te g ie s f o r co p in g w it h d em en ti a - N e e d s a ss e ss m e n t - In fo rm a ti o n - P sy ch o -E d u ca ti o n - P ro ble m s ol vi ng , sh a ri n g w it h p e e rs - S u p p o rt f ro m h e a lt h r e so u rc e s - I m p ro ve m e n t o f h o m e c a re - F in a n ce s k il ls - I n for m a ti on - P sy ch o -e d uc a ti on - D a il y s le e p l o g - I n for m a ti on - P sy ch o -e d uc a ti on P RO G R A M S T U DY D el iv e ry c h a ra ct e ri st ic s F un ct io n a l doma in Tr e a tm e n t co m p o n e n ts D ur a ti o n C o n tac ts /h o m e v is it s ( D o sa g e) P ro v id e d b y E m p h as is o n P D a n d CG aim e d a t m il d o r mo d e ra te d e m e n ti a P ri m a ry g o a l: - F u n ct io n a l doma in P D - F u n ct io n a l doma in C G C om p on e n ts fo r P D C om p on e n t fo r C G P =46 C= 4 6 U su al c ar e 6 , 1 2 , 1 8 m o n th s P 1 =3 2 P 2 =3 4 P 3 =3 3 C= 3 3 T h re e s e ss io n s, n o t d ir e ct e d a t sle e p p ro ble m s, w a lk in g , o r l ig h t 2 , 6 m o n th s P =96 C= 4 6 E d uc a ti on a l le a fl e ts f ro m A lz h e im er ’s A ssoc ia ti o n 10 w e e k s P 1 7. 5 ( 4 .7 ) C 1 7. 3 ( 3 .9 ) P 1 9 .2 ( 7. 7 ) P 1 7. 9 ( 7. 0 ) P 1 9 .1 ( 5 .8 ) C 1 8 .7 ( 6 .9 ) P 2 3 .2 ( 4 .7 ) C 2 4 .0 ( 3 .8 ) - M MS E - Ins ti tu ti o - n a li za ti on *** - T o ta l s le e p / a w a k e t im e a t n ig h t, P 1* ;P 2*, P 3* * - N u m b e r o f a w a k e n in g s - T im e i n b e d - a y ti m e s le e p o r i n a ct iv it y - Q o L-A D *** - S F -3 6 - G DS* * - C O M - F A M - P S S - Self -e ffi ca c y sc al e - F C B I*** - W H O Q o L - B R E F * ** - S S Q 6 - F S S I* * - N P I* * SD I R MB P C * M e a su re m e n t in str u m e n ts fo r P D fo r C G G ro u p s iz e P =p ro g ram C =c o n tr o l C o n tr o l C on d it ion In te rv a l a ft e r b a se lin e M M SE Mea n (S D) P-C b a se lin e S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * Table 3 D e sc ri p ti o n o f p ro g ra m s a n d s tu d ie s i n cl u d e d i n t h e r e vi e w

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A d va n ce d C a re gi ve r T ra in in g AC T (G it li n e t a l. , 2 0 10 A 22) C a re o f P e rs o n s w it h D e m e n ti a i n th e ir E n vi ro n -m e n ts CO P E (G it li n e t a l. , 2 0 10 B 23) Ta il o re d A ct iv it y Pro g ra m TA P (G it li n e t a l. , 20 0 8 2 1) 4a 4b 5 6 m o n th s m a x 9 H V s o f 9 0 m in s e a ch ( O T ), 1 H V N i n m o n th 1-4 ; 3 T C s O T, 1 T C N i n m o n th s 5 -6 (3) 4 m o n th s m a xi m u m 1 0 H V s o f 9 0 m in u te s e a ch ( O T )i n m o n th 1-4 1 H V N , 1 T C N (3) 4 m o n th s m a xi m u m 6 H V s o f 9 0 m in u te s e ac h 2 T C s o f 1 5 m in u te s (2 -3 ) O cc u p a ti on a l th er a p is t (O T ) N u rs e ( N ) se e 4 a O cc u p a ti on a l th er a p is t P D -CG m o d e rat e se e 6 a P D -CG m o d e rat e P D: Freq u e n c y o f b e h a vi or a l o cc ur re n ce s C G: U p se t co n fi d e n ce i n m a n a gi n g c a re PD: Fu n ct ion a l de p e nde nc e CG Co n fi d e n ce i n u si n g a ctiv iti e s P D: - Fre q u e n c y o f b e h a vi or a l o cc ur re n ce s - A ct iv it y en g a g em en t C G: B u rd en m a st e ry - A ss e ss m e n t un d ia gn o se d m e d ic a l co n d iti o ns - St ru ct u re d ob se rv a ti on st ra te gi e s: - E nvi ro n m e n ta l a d a p ta ti o ns - A ss is ti ve d e vic e s - E n g a g e m e n t i n a ctiv iti e s se e 6 a - St ru ct u re d ob se rv a ti on - P le a sa n t E ve n t sc h e d ul e - T ra in in g f o r th re e a ctiv iti e s - E nvi ro n m e n ta l m o d ifi ca ti o ns - In te rv ie w p re fe re n ce s a n d g o a l s e tt in g - In fo rm a ti o n , - S k il l t ra in in g : si m p li fy in g t a sk a n d co m m un i-ca tio n - P sy ch o -e d u ca ti o n , st re ss m a n a g e m e n t se e 6 a - P le a sa n t E ve n t sc h e d ul e - P sy ch o -e d u ca ti o n - S k il l t ra in in g i n co m m un ic a ti ve te chn iqu e s P RO G R A M S T U DY D el iv e ry c h a ra ct e ri st ic s F un ct io n a l doma in Tr e a tm e n t co m p o n e n ts D ur a ti o n C o n tac ts /h o m e v is it s ( D o sa g e) P ro v id e d b y E m p h as is o n P D a n d CG aim e d a t m il d o r mo d e ra te d e m e n ti a P ri m a ry g o a l: - F u n ct io n a l doma in P D - F u n ct io n a l doma in C G C om p on e n ts fo r P D C om p on e n t fo r C G P =1 3 7 C= 1 3 5 U su al c ar e 4 , 6 m o n th s P=1 0 2 C= 1 0 7 - T h re e te le ph on e ca lls - E d uc a ti on a l m a teri a ls 4 , 9 m o n th s P = 3 0 C= 3 0 W a it in g lis t 4 m o n th s P 1 3 .1 ( 8 .2 ) C 1 2 .8 (8 .1 P 1 3 .1 ( 8 .2 ) C 1 3 .6 ( 7. 9 ) P 1 1 .0 ( 7. 3 ) C 1 2 .2 ( 8 .8 ) B e h a vi or a l o cc u rr e nc e s* * - Q o l-A D - A ct iv it y En g ag e m e n t, 4 m on th s* - A B ID - F u n ct io n a l de p e nde nc e A D L, I A D L, 4 m on th s* - A B ID , 4 m on th s* * - C S D D - A ct iv it y en g a g em en t, 4 m on th s* - P le a su re i n re cre a ti o n - Q o L s ca le - A b il it y t o k e e p b u sy ,4 m on th s* - C a re g iv e r u p se t, 4 m on th s* *, 6 m on th s* ** - C o n fi d e n ce i n m a n a g in g c a re , 4 m on th s*** ,6 m on th s** - ZB I ( 1 2 i te m s) , 4 m on th s* , 6 m on th s* - C E S -D , 4 m on th s* - P e rc e iv e d C h a n g e In d e x, s 4 m on th ** *, 6 m on th s* ** - T MS I, 4 m on th s* ** , 6 m on th s* * - P e rc e iv e d C h a n g e Inde x, 4 m on th s* * - C o n fi d e n ce i n u si n g a ctiv iti e s, 4 m on th s* * - ZB I, - H o u rs d o in g f o r t h e p a ti e n t, 4 m on th s* * - H o u rs f e e l o n d u ty , 4 m on th s* ** - C E S -D - C o n fi d e n ce i n u si n g a ctiv iti e s, 4 m on th s* - T MS I M e a su re m e n t in str u m e n ts fo r P D fo r C G G ro u p s iz e P =p ro g ram C =c o n tr o l C o n tr o l C on d it ion In te rv a l a ft e r b a se lin e M M SE Mea n (S D) P-C b a se lin e S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * S ta ti sti ca ll y si g n ifi can t o utc o m e s w ith * >>

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C o m mu n it y O cc u p a ti on a l T h e ra p y i n D em en ti a C O T iD (G ra ff e t a l. , 20 0 6 19, 2 0 07 29) (V o ig t-R a d lo ff e t a l. , 2 0 1 1 20) P a rt n e rs i n C a re g iv in g : A P sy ch o e d u cat i-o n Pro g ra m (P IC ) (H e p b u rn e t a l. , 20 0 5 49) E nvi ro n m e n ta l S k il l-b ui ldi n g Pro g ra m E SP (G it li n e t a l. , 2 0 03 54) 6a 6b 7 8a 5 w e e k s 1 0 H V s o f 6 0 m in ute s e a ch (3) 6 w e e k s 6 w e e k ly G S s o f 1 2 0 m in s e ac h (3) 12 m o n th s 5 H V s o f 9 0 m in s e a ch , 1 T C i n m o n th s 1-6 ; 1 H V ,t o ta l 3 T C s in m o n th s 6 -1 2 (3) O cc u p a ti on a l th er a p is t M u lt id is cip li -n ar y t e am O cc u p a ti on a l th er a p is t P D -CG m il d, m o d e rat e CG mil d CG -P D m o d e rat e P D: Daily fu nc ti o n ing C G: Com p e te n ce P D: - CG: Dist re ss B u rd en P D: - Be h a vi o ra l o cc ur re n ce s - D e p e nde nc e A DL - D e p e nde nc e IA DL C G: - Stre ss re d u ct io n - C om p e te n ce - I n te rv ie w p re fe re n ce s a n d g o a l s e tt in g - St ru ct u re d ob se rv a ti on - T ra in in g o f m e a n ing fu l a ctiv it ie s w it h co mp e ns a ti o n st ra te gi e s - E nvi ro n m e n ta l a d a p ta ti o ns - A ct iv it y g ro u p s (o cc u p a ti on a l o r m u si c th er a p is t) - E nvi ro n m e n ta l a d a p ta ti o ns - A ss is ti ve d e vic e s - I n te rv ie w p re fe re n ce s a n d g o a l s e tt in g - I n fo rm a ti o n , - S k il l t ra in in g , - P sy ch o -e d u ca ti o n (b e h a vi or a l ma n a ge m e n t) - St re ss m a n a g e m e n t P1: p sy ch o -e d uc a ti on P 2 : s a m e a s P 1 , b u t c o m - p le te d w it h a D e ci si o n M a k in g f ra m e w o rk p a yi n g a tt e n ti o n t o va lu e s a n d p re fe re n ce s - H om e w or k - D e m o n st ra ti o n s o f e ffe ctiv e m a n a g e m e nt -te ch n iq u e s b y t h e O cc u p a ti o n a l t h er a p is t o r m u si c t h er a p is t - In te rv ie w p re fe re n ce s a n d g o a l s e tt in g - In fo rm a ti o n , - P sy ch o -e d uc a ti on - S k il l t ra in in g : si m p li fy in g t a sk a n d co m m un ic a ti o n P RO G R A M S T U DY D el iv e ry c h a ra ct e ri st ic s F un ct io n a l doma in Tr e a tm e n t co m p o n e n ts D ur a ti o n C o n tac ts /h o m e v is it s ( D o sa g e) P ro v id e d b y E m p h as is o n P D a n d CG aim e d a t m il d o r mo d e ra te d e m e n ti a P ri m a ry g o a l: - F u n ct io n a l doma in P D - F u n ct io n a l doma in C G C om p on e n ts fo r P D C om p on e n t fo r C G P =68 C= 6 7 U su al c ar e 6 , 1 2 w e e k s P =54 C= 5 0 O n e h o m e v is it co un se li n g ; le a fl e t o n c o p in g w it h d em en ti a 6 w e e k s, 4 , 6 , 1 2 m o n th s P 1 =7 9 P 2 =7 2 C= 6 4 U su al c ar e 6 , 1 2 m o n th s P =8 9 C= 1 0 1 U su al c ar e 6 m o n th s P 1 9 .0 (5 .7 ) C 1 9 .0 (4 .0 ) P 2 0 .4 ( 3 .1 ) C 1 9 .0 ( 3 .3 ) P 19 .2 2 C 1 7.1 2 P 1 1 .6 ( 7. 3 ) C 1 2 .5 ( 7.1 ) - A M P S *** - I DDD ** * - C S D D *** - D q o l*** - G H Q *** - PR PP - I DDD - C S D D - D q o l - S F -1 2 p h ys ic a l, m e n tal - - R M B P C - F IM A D L - F IM I A D L - S C Q *** - C E S -D *** - G H Q *** - D q o l*** - M a st e ry S ca le ** * - S CQ - C E S -D - D q o l - S F -1 2 p h ys ic a l, m e n ta l - A D L c a re ( h o u rs p e r d a y) - D is tr e ss m e a su re , 6 m o n th s* - B A C S , 6 m o n th s* - C o m p e te n ce , 1 2 m o n th s* - R M B P C : u p se t w it h m em o ry -re la te d b eh a vi or s, 6 m on th s* - R M B P C : u p se t w it h d is ru p tiv e b eh a vi o rs - H o u rs p ro vi d in g c a re - D ay s r ec ei vi n g h el p, 6 m on th s* - M a st er y I n d e x - T MS I - P er ce iv e d C h a n g e I n d e x (Q o L) a ff e ct , 6 m on th s* M e a su re m e n t in str u m e n ts fo r P D fo r C G G ro u p s iz e P =p ro g ram C =c o n tr o l C o n tr o l C on d it ion In te rv a l a ft e r b a se lin e M M SE Mea n (S D) P-C b a se lin e S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * S ta ti sti ca ll y si g n ifi can t o utc o m e s w ith * >>

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8b 9 10 E nvi ro n m e n ta l S k il l-b ui ldi n g Pro g ra m E S P (G it li n e t a l. , 2 0 01 55) Re d u ci ng D is a b ili ty in A lz h e im er D is e a se R D A D (T e ri e t a l. , 2 0 0 3 56) M in n e so ta F a m il y W or k sh op MF W P sy ch o-e d u ca ti o -n a l I n te rv e n ti on (O st w a ld e t a l. , 1 999 62) 3 m o n th s 5 H V s 9 0 m in s e a ch, b i-w e e k ly (2) 3 m o n th s, t o ta l o f 1 2 H V s o f 6 0 m in s e a ch (4 ) 7 w e e k s 7 w e e k ly G S s 120 m in s (3) Oc cu pa ti o -n al t h e rap is t E xp eri en ce d h o m e h e a lt h pr o fe ss ion a ls M u lt id is cip li -n a ir y t e a m CG -P D m o d e rat e P D -CG m o d e rat e CG -P D m il d t o se ve re P D: - Be h a vi o ra l o cc ur re n ce s - D e p e nde nc e A DL - D e p e nde nc e IA DL C G: Upse t Self -e ffi ca c y w it h b e h a vi o r a n d A DL /I A DL P D: - Ph ys ic a l fu nc ti o n - A ffe ctiv e st a tu s/ d e pr e ss ion C G: - PD: Beh a vi or a l pr ob le m s C G: Burd en M ood - E nvi ro n m e n ta l a d a p ta ti o ns - A ss is tiv e d e vi ce s - A e ro b ic , str e n g th , b al an ce an d fl e xib ili ty tr a in in g - T e st o n co gn it iv e fu nc ti o n ing - A ctiv iti e s: m in im u m o f 2 G S s - I n te rv ie w p re fe re n ce s a n d g o a l s e tt in g - I n fo rm a ti o n - P sy ch o -e d uc a ti on - S k il l t ra in in g : si m p li fy in g t a sk a n d co m m un ic a ti o n - A e ro b ic , s tr e n g th , b al an ce , an d fl e xi b il it y t ra in in g - P sy ch o -e d uc a ti on (b e h a vi or a l ma n a ge m e n t) - P le a sa nt a ctiv iti e s - I n for m a ti on - P sy ch o -e d uc a ti on P RO G R A M S T U DY D el iv e ry c h a ra ct e ri st ic s F un ct io n a l doma in Tr e a tm e n t co m p o n e n ts D ur a ti o n C o n tac ts /h o m e v is it s ( D o sa g e) P ro v id e d b y E m p h as is o n P D a n d CG aim e d a t m il d o r mo d e ra te d e m e n ti a P ri m a ry g o a l: - F u n ct io n a l doma in P D - F u n ct io n a l doma in C G C om p on e n ts fo r P D C om p on e n t fo r C G P =93 C= 7 8 Us u a l c a re , e d uc a ti on a l m a teri a ls , b o o k le t w it h t ip s fo r s a fe ty i n t h e hou se 3 m o n th s P =7 6 C= 7 7 U su al c ar e 3, 6 ,1 2 ,1 8 , 2 4 m o nt hs P =52 C= 3 1 W a it in g lis t 6 w e e k s 3 , 5 m o n th s ? P 1 7. 6 ( 6 .8 ) C 1 5 .9 ( 7. 4 ) P 1 7. 8 1 (7. 1 0 ) C 1 9 .2 0 (7. 3 3 ) - R M B P C - F IM A D L - F IM I A D L* - S F36 * - SIP * - C S D D * - T im e t o a d mi ss io n R MB P C - B e h a vi o r self -e ffi ca c y - A D L self -e ffi ca c y - IA D L self -e ffi ca c y - B e h a vi o r up se t - A D L u p se t - IA D L u p se t - - ZB I, 5 m o nt hs * - R M B P C - C E S -D M e a su re m e n t in str u m e n ts fo r P D fo r C G G ro u p s iz e P =p ro g ram C =c o n tr o l C o n tr o l C on d it ion In te rv a l a ft e r b a se lin e M M SE Mea n (S D) P-C b a se lin e S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * >>

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11 12 13 C as e m an ag em en t (J a n se n e t a l. , 2 01 1 31) Mu lt ic omp on en t sup p or t p ro gr am (E lo n ie m i e t a l. , 20 0 9 42) H om e C ar e P ro gr am G oa , I n di a (D ia s e t a l. , 20 0 8 43) 1 2 -m o n th m in im u m : 2 H V s + T C e ve ry 3 m o n th s; m o re co n ta ct i f n e ce ss ar y (1-2 ) M a x. 2 y e a rs fl e xi b le H V s (m e a n 3 x a y e a r) fl e xi b le T C s ( m e a n 15 x y e a r) 5 G S s f o r s p o u se CG 5 G S s f o r P D (4 ) 6 m o n th s H V m in im u m , b i-w e e k ly ( to ta l 1 2 H V s o r m o re ); TC GS ( vo lu n ta ry ) (3 -4) D is tr ic t n u rs e F a m il y c a re co or d in a tor (t ra in e d p u b li c h e a lt h n u rs e) H o m e c a re a dv iso r ( be in g li te ra te , p re fe ra b ly h ig h er s e c. sch o o l) P sy ch ia tr is t CG -P D m il d CG mil d, m o d e rat e CG mil d, m o d e rat e P D: Qua li ty o f l if e C G: Com p e te n ce , Q u a li ty o f l if e P D: Dela y o f ins ti tu ti o n a li -za tio n C G: Use o f s e rv ic e s P D: Beh a vi or a l pr ob le m s C G: Burd en H ea lt h st a tu s - A ss e ss m e n t - In fo rm a ti o n - In fo rm in g t h e p ri m a ry c a re p h ysi ci a n F a cu lt a ti ve: - R e fe rr in g t o o th er h e a lt h ca re p ro fe ss io - n a ls - E xe rc is e tr a in in g - C o n su lt p sy ch ia tr is t - W h e n u se fu l: m e di ca ti o n - A ss e ss m e n t, - I n for m a ti on , P la n n in g, o rg a n iz in g, co ll a b o ra ti o n , a n d m o n it o ri n g o f c a re ; F a cu lt a ti ve: - G ro u p s u p p o rt p ro g ram - I n te rv ie w p re fe re n ce s a n d g o a l s e tt in g - T a ilor e d s u pp or t p la n i n c o ll a b o ra ti - o n w it h c ou ple G S: - I n fo rm a ti o n - E m o ti on a l s u pp or t - P sy ch o -e d u ca ti o n - I n d iv id u a li ze d se rv ic e s - I n fo rm a ti o n a n d a d - vi ce f o r r e g u la ti o ns - E m o ti on a l s u pp or t - P sy ch o -e d u ca ti o n - P ra ct ic a l s u p p o rt - F a m il y n e tw o rk in g P RO G R A M S T U DY D el iv e ry c h a ra ct e ri st ic s F un ct io n a l doma in Tr e a tm e n t co m p o n e n ts D ur a ti o n C o n tac ts /h o m e v is it s ( D o sa g e) P ro v id e d b y E m p h as is o n P D a n d CG aim e d a t m il d o r mo d e ra te d e m e n ti a P ri m a ry g o a l: - F u n ct io n a l doma in P D - F u n ct io n a l doma in C G C om p on e n ts fo r P D C om p on e n t fo r C G P =54 C= 4 5 U su al c ar e 6 , 1 2 m o n th s P = 6 3 C= 6 2 - W ri tt e n i n fo - R e fe rr a ls t o co m m un it y se rv ic e s - C o n ta ct w it h st u d y n u rs e d u ri n g a ss e ss - m e n ts ( 0 ,6 , 1 2 m o n th s) 6 ,1 2 ,24 m o n th s P =41 C= 4 0 E d uc a ti on on d em en ti a 3 , 6 m o n th s P 2 2 ( 4 .2 ) C 2 2 .7 ( 3 .8 ) P 1 3 .4 ( 6 .2 ) C 1 4 .2 ( 6 .6 ) M il d, m o d e rat e D Q ol T im e t o l o n g - te rm ins ti tu - ti on a li za ti on , 18 m on th s* - E A S I - N P I - S CQ - S F -3 6 - C E S -D - S PPI C Us e a n d c o st s o f c a re se rv ic e s, 24 m on th s* - G H Q * - Z B I* - N P I M e a su re m e n t in str u m e n ts fo r P D fo r C G G ro u p s iz e P =p ro g ram C =c o n tr o l C o n tr o l C on d it ion In te rv a l a ft e r b a se lin e M M SE Mea n (S D) P-C b a se lin e S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * >>

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14 15 16 C ol la b or at iv e c ar e f or O ld er A du lt s w it h Al zh ei me r D ise ase (C al lah an e t a l. , 20 0 6 45) R ea li ty O ri en ta ti on wit h c h ol in es te ra se inhi b it or s (O n d e r e t a l. , 20 0 5 47 ) E ar ly H om e C ar e P ro gr am (C h u e t a l. , 2 0 0 0 60) 1 y e a r fac e -t o -f ac e co ns u lt a ti o ns in p ri m a ry c a re cl in ic a n d T C s w h en n e e d e d (m e a n 1 p e r m o n th) (4 ) 2 5 w e e k s [b y c a re g iv e r: th re e t im e s a w e e k ( 3 0 m in u te s) ] (1) 18 m o n th s m in im u m 1 T C o r H V a m o n th , m o re w h en n e e d e d (4 ) P ri m a ry c a re p h ys ic ia n a n d g eri a tri c n u rs e p ra cti ti o n e r Tr a in in g b y p h ys ic ia n s, p sy ch o lo g is ts an d t h e rap is ts C a se m a n a g e r (n u rs e) a n d m u lt id is cip li -n a ir y t e a m CG mil d CG mil d, m o d e rat e CG -P D m il d P D: B e h a vi or a l pr ob le m s C G: St re ss H ea lt h st a tu s P D: C o g n it iv e fu nc ti o n ing C G: We ll -b e in g P D: - Lo n g -t e rm pl a n n ing a nd u se o f s e rv ic e s - T im e t o a d mi ss io n C G: - B u rd en - M ood - C h o li n e st e ra se in h ib it o rs - E xe rc is e g u id e li n e s w it h a g u id e b o o k a n d vid e o - V o lu n ta ry g ro u p se ss io n s f o r e xe rc is e - T h re e r e a li ty or ie n ta ti on se ss io n s b y ca re g iv e rs e a ch w e e k ( 3 0 m in s) a n d o ri e n ta ti o n p ro m p ts d u ri n g th e d a y - D o n ep e zi l W h en a ppr opr ia te ; - H o m e s e rv ic e s, re spit e - O cc u p a ti o n a l th er a p y - S o ci a l w o rk e r - C o m m u n ic a ti n g d ia g n o si s - In fo rm a ti o n , l e g a l an d fi n an ci al a d vi ce - S k il l t ra in in g i n co m m un ic a ti o n - P sy ch o -e d u ca ti o n (c o p in g s k ills ) - fa cu lt a ti ve: 1 -8 b e h a vi or a l in te rv e n ti o n p ro to co ls - E d u ca ti o n : t ra in in g R O T ( o n e m e e ti n g ) - M an u al - P sy ch o -e d u ca ti o n (b e h a vi or a l ma n a ge m e n t) W h e n a ppr opr ia te ; - H o m e s e rv ic e s, re spit e, - O cc u p a ti o n a l th er a p y - S o ci a l w o rk e r P RO G R A M S T U DY D el iv e ry c h a ra ct e ri st ic s F un ct io n a l doma in Tr e a tm e n t co m p o n e n ts D ur a ti o n C o n tac ts /h o m e v is it s ( D o sa g e) P ro v id e d b y E m p h as is o n P D a n d CG aim e d a t m il d o r mo d e ra te d e m e n ti a P ri m a ry g o a l: - F u n ct io n a l doma in P D - F u n ct io n a l doma in C G C om p on e n ts fo r P D C om p on e n t fo r C G P = 8 4 C= 6 9 A ug m e n te d u su a l c a re: fac e -t o -f ac e co un se li n g co m m un ic a ti n g th e d ia g n o si s a n d w ri tt e n in for m a ti on 6 ,1 2, 18 m o n th s P = 7 9 C= 7 7 D o n ep e zi l 6 m o n th s P =3 7 C= 3 8 Us u a l c a re + in for m a ti on p ac k ag e 3 ,6 ,1 0 .1 4 .1 8 m o nt hs P 1 7. 5 ( 5 .2 ) C 1 8 .6 ( 5 .9 ) P 20 .2 (3 .3 ) C 1 9 .9 ( 3 .0 ) P 2 2 .7 ( 3 .8 ) 2 2 .8 (4 .2 ) - N P I, 1 2, 1 8 m on ths ** - C S D D ( b y C G ) - A D L-A D C S - Te le p h o n e v e rs io n o f M MS E - P h a rm a co lo g i ca l tr e a tm e n t - H e a lt h c a re re so ur ce us e - M MS E , 6 m on th s* - A D A S – C o g n it io n, 6 m on th s* * - B I - N u m b e r im p a ir e d IA D L - N P I D a ys t o a d mi ss io n - N P I, 12 m on th s* - P H Q ( 9 i t) , 18 m on th s* - C a re g iv e r B u rd en Inv e n to ry - H R D S - S F -3 6 - ZB I, 6 m on th s* - R M B P C , 6 m on th s* M e a su re m e n t in str u m e n ts fo r P D fo r C G G ro u p s iz e P =p ro g ram C =c o n tr o l C o n tr o l C on d it ion In te rv a l a ft e r b a se lin e M M SE Mea n (S D) P-C b a se lin e S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * >>

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17 18 19 M ed ica re A lz hei m er ’s D is ea se D em on st ra -ti on E va lu at ion M A DDE (M il ler , N e w co m er e t a l. , 1 9 9 9 64) (N e w co m er , M il ler e t a l. , 1 9 9 9 65) Int e g ra tiv e R e a c tiv a ti o n a n d R e h a b ili ta ti o n Pro g ra m IR R (B a k k e r e t a l. , 2 01 1 35 ) S u pp or ti n g p ro g ram (E lo n ie m i-S u lk a v a e t a l. , 2 0 0 1 58) 3 y e a rs C a se ma n a ge m en t fo r M o d el A s it e s: 1 :1 0 0 + l e ss fin a n cia l r e so u rc e s M o d e l B s it e s: 1 :3 0 + m o re fin a n cia l res o u rc es (?) Cli n ic a l s ta y o f 1 3 w e ek s in a p sy ch ia tr ic n u rs in g h o m e u n it (4 ) 2 y e a rs - 1 0 -d a y c li n ic a l tr a in in g p ro g ra m - F le xi b le H V s, fl e xi b le T C s, w h en n e e d e d - A n n u a l t ra in in g co u rs e s, 5 d a ys (4 ) S o ci a l w o rk e r or nur se Mu lt i-di sc ip li n a ry te a m F a m il y c a re co or d in a tor (n u rs e) CG -P D m il d t o se ve re PD mil d CG -P D m o d e rat e P D: T im e t o a d mi ss io n C G: - A D L/ IA D L A ss ist a n ce - B u rd en - M ood P D: N e u ro - p sy ch ia tr ic sy m pt o ms C G: B u rd en , C om p e te n ce P D: - T im e t o a d mi ss io n C G: -C a se ma n a ge m en t M o d e l A s it e s: 1 :1 0 0 M o d el B s it e s: 1 :3 0 W h e n a ppr opr ia te ; - H o m e s e rv ic e s, re spit e - T h er a p ie s - A d a p ti ve a n d a ss is tiv e e q ui p m e n t - D ia g n o st ic a ss e ss m e n t - In d iv id u a l c a re p la n w it h c o u n se - li n g , c o g n it iv e b eh a vi or a l th er a p y, b eh a vi o ra l th er a p y, s u p p o rt , re h a b il it a ti o n , a n d p sy ch o -e d uc a ti on - A dv oc a c y - C o m p reh en si ve su pp or t - A ss is ta n ce so ci a l a n d h e al th car e se rv ic e s C a se ma n a ge m e n t M o d e l A s it e s: 1 :1 0 0 M o d e l B s it e s: 1 :3 0 W h e n a ppr opr ia te ; - H o m e s e rv ic e s, re spit e - T h er a p ie s - P sy ch o lo g ic a l co un se li n g - F a m il y t h e ra p y - A dv oc a c y - C o m p reh en si ve su pp or t - C ou n se li ng - A ss is ta n ce s o ci a l an d h e al th car e se rv ic e s - 2 4 -h o u r a va il a b ili ty P RO G R A M S T U DY D el iv e ry c h a ra ct e ri st ic s F un ct io n a l doma in Tr e a tm e n t co m p o n e n ts D ur a ti o n C o n tac ts /h o m e v is it s ( D o sa g e) P ro v id e d b y E m p h as is o n P D a n d CG aim e d a t m il d o r mo d e ra te d e m e n ti a P ri m a ry g o a l: - F u n ct io n a l doma in P D - F u n ct io n a l doma in C G C om p on e n ts fo r P D C om p on e n t fo r C G P 1 3 9 6 5 P2 4 1 3 0 C 39 4 4 P 1+ P 2 2 7 3 1 C 2 5 7 6 U su al c ar e 6 ,1 2, 18 , 2 4 ,3 0 , 36 m o n th s P =81 C= 8 7 U su al c ar e 3 , 9 m o n th s P =53 C= 4 7 U su al c ar e 1 2 , 2 4 m o n th s ± 18 P 2 0 .0 4 (4 .5 0 ) C 20 .58 (3 .8 4 P 1 4 .4 (6 .2) C 1 5 .3 (5 .5 ) T im e t o a d m is si o n - N P I s ym pt o ms , 3 m on th s* *, 9 m on th s* - N P I s e ve ri ty , 3 m on th s* *, 9 m on th s* - M M SE, 3 m on th s* - B I, 3 m o n th s* - S F -2 0 - E Q 5 D - L en g th o f s ta y in n u rs in g h o m e T im e t o lon g -t e rm ins ti tu ti o n a li - za ti o n, 12 m on th s* - H o u rs o f ca re gi vi n g - Z B I, 6 m on th s* - G D S , 1 8 ,2 4 m on ths * - N P I d is tr e ss , 3 m on th s* - C B, 3 m on th s* ** 9 m on th s* ** - C CL, 3 m on th s* ** 9 m on th s* * -M e a su re m e n t in str u m e n ts fo r P D f o r C G G ro u p s iz e P =p ro g ram C =c o n tr o l C o n tr o l C on d it ion In te rv a l a ft e r b a se lin e M M SE Mea n (S D) P-C b a se lin e S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * >>

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20 Tr a in in g p ro g ra m (B ro d a ty, G re sh a m 19 8 9 71) P ri n ce H en ry H o spit a l p ro g ra m ( B ro d a ty e t a l. , 1 9 9 7 70) 1 0 d a ys i n -h o sp it a l tr ai n in g g ro u p TC s 2 -6 w e ek s (4 ) Pro g ra m co o rdi n a to r i n p sy ch ia tr ic h o spit a l, m u lt id is cip li -n ar y t e am CG -P D m il d, m o d e rat e P D: T im e t o a d mi ss io n C G: - M e n ta l h e al th - M ood - M em o ry t ra in in g - R o t - A ctiv iti e s - R em in is ce n ce - R e cr ea ti o n a n d ou ti ng s - P sy ch o - E d uc a ti on - S k il l t ra in in g - F a m il y th er a p y - R e cr e a ti o n a nd ou ti ng s P RO G R A M S T U DY D el iv e ry c h a ra ct e ri st ic s F un ct io n a l doma in Tr e a tm e n t co m p o n e n ts D ur a ti o n C o n tac ts /h o m e v is it s ( D o sa g e) P ro v id e d b y E m p h as is o n P D a n d CG aim e d a t m il d o r mo d e ra te d e m e n ti a P ri m a ry g o a l: - F u n ct io n a l doma in P D - F u n ct io n a l doma in C G C om p on e n ts fo r P D C om p on e n t fo r C G P 3 3 C 1 32 C 2 31 C 1 m e m o ry tr a in in g f o r P D a n d r e sp it e f o r CG C2 w a it in g l is t 3, 6 ,1 2 m o n th s/ 8 y e a rs P 1 7. 1 (6 .5 ) T im e t o a d m is si o n , 30 m on th s P :6 5% l iv ed i n th e c om m un it y, C 1: 26 % C 2? 8 y ea rs : P 7 9% i n n ur si ng ho m e* , C 1 9 0 % , C 2 8 3% GH Q, 1 2 m on th s* M e a su re m e n t in str u m e n ts fo r P D fo r C G G ro u p s iz e P =p ro g ram C =c o n tr o l C o n tr o l C on d it ion In te rv a l a ft e r b a se lin e M M SE Mea n (S D) P-C b a se lin e S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h * S ta ti sti ca ll y si g n ifi can t o utc o m e s w it h* N o te s: D o sa g e / in te n si ty : 1 = m in im a l; ( 1 –2 s e ss io n s) , 2 = m o d e ra te ( 3 –5 s e ss io n s) , 3 = m e d iu m h ig h ( 6 –1 0 s e ss io n s) , 4 = h ig h / in te n si ve ( >1 0 s e ss io n s; B ro d a ty e t a l. , 2 0 0 3 ) * s ig n ifi ca n t p = 0 .0 5 ; * *p = 0 .0 1 , * ** p = 0 .0 0 1 . E xp la n a ti o n o f a b b re vi a ti o n s: A B ID = A g it a te d B e h a vi o r I n D e m e n ti a , A lz h e im e r D is e a se C o o p e ra ti ve St u d y; A D A S = A lz h e im e r D is e a se A ss e ss m e n t S ca le ; A D L- A D C S = A ct iv it ie s o f D a il y Li vi n g -A lz h e im e r D is e a se C o o p e ra ti ve St u d y G ro u p ; A D L = A ct iv it ie s o f D a il y L iv in g ; A M P S = A se ss m e n t o f M o to r a n d P ro ce ss S k il ls ; B A C S = B e li e fs A b o u t C a re g iv in g S ca le ; B I = B a rt h e l In d e x; C B = C a re g iv e r B u rd e n ; C C L= C a re g iv e r C o m p e te n ce L is t; C E S -D = C e n tr e o f E p id e m ic St u d ie s – D e p re ss io n ; C G =C a re g iv e r; C S D D = C o rn e ll S ca le D e p re ss io n i n D e m e n ti a ; C O M - F A M = C o m m u n ic a ti o n a n d I n te rp e rs o n a l R e la ti o n sh ip s, s u b sc a le o f F a m il y A ss e ss m e n t M e a su re ; D q o l = D e m e n ti a Q u a li ty o f L if e i n st ru m e n t; E Q 5 D = E u ro -Q u a li ty o f L if e 5 D ; E A S I = E ve ry d a y A b il it ie s S ca le f o r I n d ia ; F C B I = F a m il y C a re g iv in g B u rd e n I n ve n to ry ; F IM = F u n ct io n a l In d e p e n d e n t M e a su re ; F S S I = F a m il y S u p p o rt S e rv ic e s I n d e x; G D S = G e ri a tr ic D e p re ss io n S ca le ; G H Q = G e n e ra l H e a lt h Q u e st io n n a ir e; G S = g ro u p s e ss io n ; H V = h o m e v is it ; H R D S = H a m il to n R a ti n g D e p re ss io n S ca le ; I A D L = I n st ru m e n ta l A ct iv it ie s o f D a il y L iv in g ; I D D D = I n te rv ie w f o r D e te ri o ra ti o n i n D a il y L iv in g A ct iv it ie s i n d e m e n ti a ; P e rf o rm a n ce s ca le ; I n it ia ti ve s ca le ; M MS E = M in i M e n ta l St a te E xa m in a ti o n ; N P I = N e u ro -P sy ch ia tr ic I n ve n to ry ; P D = P e rs o n w it h D e m e n ti a ; P H Q = P a ti e n t H e a lt h Q u e st io n n a ir e; P R P P = P e rc e iv e R e ca ll P la n a n d P e rf o rm S ys te m o f T a sk A n a ly si s; P S S = P e rc e iv e d St re ss S ca le ; Q o l-A D = Q u a li ty o f L if e – A lz h e im e r’ s D is e a se S ca le ; R M B P C = R e vi se d M e m o ry a n d B e h a vi o ra l P ro b le m s C h e ck li st ; S C Q = S e n se o f C o m p e te n ce Q u e st io n n a ir e; S D I = S le e p D is tr e ss I n te rv ie w ; S F - 1 2 ( 2 0 , 3 6 ) H S Q = S h o rt F o rm H e a lt h S u rv e y Q u e st io n n a ir e, P h ys ic a l s ca le , M e n ta l s ca le ; S IP = S ic k n e ss I m p a ct P ro fi le ; S P P IC = S e lf P e rc e iv e d P re ss u re I n fo rm a l C a re ; S S Q = S o ci a l S u p p o rt Q u e st io n n a ir e; T C = t e le p h o n e c o n ta ct ; T S M I = Ta sk M a n a g e m e n t St ra te g y I n d e x; W H O Q o L B R E F = W o rl d H e a lt h O rg a n iz a ti o n Q u a li ty o f L if e M e a su re -B ri e f V e rs io n ; Z B I = Z a ri t B u rd e n I n te rv ie w

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Study characteristics and strength of the body of evidence

The studies varied with regard to measurement instruments, control conditions, and/or time to follow-up (Table 3). “Usual care” and “waiting list” are the most often used control conditions [1, 4a, 5, 6a, 7, 8a, 9, 10, 11, 15, 17, 19, 18, 20]. Some studies use information leaflets for the informal caregiver [3, 4b, 8b, 12, 13, 16], or one to three face-to-face contacts, or telephone contacts [2, 6b, 12, 14, 20] in the control condition. Following the GRADE approach, four limitations influence the strength of the body of evidence. Two of them, lack of blinding of participants and therapists as well as indirectness of evidence (the control condition is usual care), are realistic for studies in the current field. The other two limitations are apparent in the studies: a short follow-up period or heterogeneity of results (e.g. significant outcomes at different follow-up moments) [12, 14, 19, 20]. Although all studies targeted both members of the dyad, two studies had outcome measures for the person with dementia only [9] or for the caregiver only [7].

Effects of dyadic psychosocial programs

Eleven of the 23 studies concerning ten programs showed statistically significant positive effects for both members of the dyad [1, 3, 4a, 4b, 5, 6a, 8b, 14, 18, 19, 20]. Four studies showed statistically significant effects for the person with dementia only [2, 9, 12, 15], and six studies found statistically significant effects for the caregiver only [13, 7, 8a, 10, 16, 17]. This was partly because these studies had no effect on outcomes of interest for the other person of the dyad, and partly because outcomes were not measured for the other person of the dyad (Table 3). The two remaining studies did not show any statistically significant effects [6b, 11].

Effects on the person with dementia

Behavioral Problems

Eight of the 23 studies, concerning eight programs, measured behavioral problems, [4b, 5, 8a, 10, 13, 14, 15, 18] (Figure 2).The strength of the body of evidence for this outcome is moderate. Three of the eight studies had positive outcomes for behavi-oral problems (neuropsychiatric symptoms) [5, 14, 18]: one short-period program, one long-lasting program, and one program with hospitalization. The three pro- grams comprised different intervention components for each member of the dyad. The other five studies that did not show statistically significant effects on behavi-oral problems involved programs with comparable intervention components, both short-period programs [4b, 8a, 10] and long-lasting programs [13, 15]. There was no evident relation between intervention components and the outcome of “behavi-oral problems”.The IRR-program with hospitalization [18] showed positive effects

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on people with mild dementia but high scores on behavioral problems. For example, the long-lasting Collaborative Care program [14] showed positive effects on people with moderate dementia and regular behavioral problems and the short-period TAP- program [5] showed positive effects on people with moderate dementia and regular behavioral problems.

Figure 2 Person with dementia outcomes: behavioral problems

Study or Subgroup 1.1.1 Intensive, limited TAP Gitlin MFW Ostwald (1) ESP Gitlin 03 COPE Gitlin

1.1.2 Extensive, long lasting ROT Onder

Home Care Dias Coll-care Callahan 1.1.3 Temporary hospitalization IRR Bakker Mean 18.8 6.16 1.88 6.7 0.9 6.6 8 18.26 SD 17.6 5.26 1.57 10.6 15.8 4.8 12 14.74 Total 27 52 89 102 70 33 84 62 Mean 60.8 4.87 1.96 5.5 2.5 8.4 16.1 22.5 SD 85.3 3.54 1.88 8 17.1 5.1 19.4 15.1 Total 29 31 101 107 67 26 69 66 IV, Random, 95% CI -0.66 [-1.20, -0.12] 0.27 [-0.17, 0.72] -0.05 [-0.33, 0.24] 0.13 [-0.14, 0.40] -0.10 [-0.43, 0.24] -0.36 [-0.88, 0.16] -0.51 [-0.83, -0.19] -0.28 [-0.63, 0.07]

Experimental Control Std. Mean Difference

(1) Ostwald; groupprogram

Std. Mean Difference IV, Random, 95% CI

-2 -1 0 1 2

Favours experimental Favours control SD: Standard Deviation; CI: Confidence Interval

Mood

Six of the 23 studies, involving five programs, measured the mood of the person with dementia as a separate outcome [3, 5, 6a, 6b, 9, 14] (Figure 3). The body of evidence for this outcome is strong because of longer follow-up periods and comparison with a control condition other than usual care, although there is heterogeneity in the results of the studies on the Community Occupational Therapy in Dementia (COTiD) program [6a, 6b]. Three of the six studies showed statistically significant positive effects on the mood of the person with dementia [3, 6a, 9]; these were all short-period programs: one group program for early-stage dementia and two individual programs with home visits for mild and moderate dementia. In all three programs the professional involved the person with dementia actively in group sessions [3], activities [6a] or exercise [9]. The study on the long-lasting Collaborative Care program showed a trend toward positive effects on mood, although this was not statistically significant [14]. The two remaining studies, both involving a short-period program, did not show a statistically significant effect [5, 6b], although they comprise intervention components comparable to those of the programs with statistically significant effects.

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Figure 3 Person with dementia outcomes: mood

Daily activities

Ten of the 23 studies, involving eight programs, measured independence and engagement in ADL [4b, 5, 6a, 6b, 8a, 8b, 13, 14, 15, 18] (Figure 4). The strength of the body of evidence for this outcome is moderate. Five of the ten studies showed statistically significant positive effects [4b, 5, 6a, 8b, 18]. Four of these concern short-period programs in which the professional actively involves both the person with dementia as the caregiver in skill training [4b, 5, 6a, 8b]. The intervention components in these programs are daily activity training, choosing meaningful (pleasant or purposeful) activities, and environmental adaptations for the person with dementia; and psycho-education and skills training for the caregiver. Whereas these four studies measured instrumental ADL (IADL), the outcome of the fifth study [18], concerning the IRR program, was personal care, measured with the Barthel Index. One other study, the long-lasting Reality Orientation [15] program, shows a trend toward positive effect on personal care, also measured with the Barthel Index. Of the four remaining studies, two long-lasting programs [13,14], showed no statistically significant effects. The other two were trials of COTiD and the Environmental Skill-Building Program [6b, 8a], and thus they had inconsistent results. Study or Subgroup 1.2.1 Intensive, limited COTiD Graff 07 RDAD Teri ESML Logsdon (1) TAP Gitlin COTiD Voigt-Radloff 1.2.2 Extensive, long lasting Coll-care Callahan Mean 6.5 5.2 5.05 9 12.7 3.5 SD 5.3 3.6 3.47 4.6 7.8 3.9 Total 68 76 92 27 41 84 Mean 9.2 6.2 5.91 8.7 10.3 5.8 SD 6.4 3.8 4.03 4.7 6.1 5.9 Total 67 77 44 29 37 69 IV, Random, 95% CI -0.46 [-0.80, -0.12] -0.27 [-0.59, 0.05] -0.23 [-0.59, 0.13] 0.06 [-0.46, 0.59] 0.34 [-0.11, 0.78] -0.47 [-0.79, -0.14]

Experimental Control Std. Mean Difference

(1) Logsdon: groupprogram

Std. Mean Difference IV, Random, 95% CI

-2 -1 0 1 2

Favours experimental Favours control SD: Standard Deviation; CI: Confidence Interval

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Study or Subgroup 1.3.1 Intensive, limited COTiD Graff TAP Gitlin ESP Gitlin 01 COPE Gitlin ESP Gitlin 03 COTiD Voigt-Radloff 1.3.2 Extensive, long lasting ROT Onder

Home Care Dias Coll-care Callahan 1.3.3 Temporary hospitalization IRR Bakker Mean 14.4 -2.3 5.54 -2.8 1.68 14.3 0.1 8.5 48.6 13.62 SD 6.1 0.3 0.6 1.2 0.8 9.5 8.3 2.3 17.7 5.29 Total 68 27 93 102 89 54 70 33 84 68 Mean 25.3 -2 5.75 -2.5 1.64 13.5 2.9 8.7 44.6 14.4 SD 8.6 0.4 0.36 1.1 0.88 10.3 8.2 2.2 17 4.51 Total 67 29 78 107 101 50 67 26 69 77 IV, Random, 95% CI -1.46 [-1.84, -1.07] -0.83 [-1.38, -0.28] -0.41 [-0.72, -0.11] -0.26 [-0.53, 0.01] 0.05 [-0.24, 0.33] 0.08 [-0.30, 0.47] -0.34 [-0.67, -0.00] -0.09 [-0.60, 0.43] 0.23 [-0.09, 0.55] -0.16 [-0.49, 0.17]

Experimental Control Std. Mean Difference Std. Mean Difference

IV, Random, 95% CI

-2 -1 0 1 2

Favours experimental Favours control

Figure 4 Person with dementia outcomes: ADL/IADL

Quality of life

Eight of the 23 studies, concerning seven programs, measured the quality of life of the person with dementia [3, 4b, 5, 6a, 6b, 9, 11, 18] (Figure 5). The body of evidence for this outcome is moderate to strong. Four of the eight showed a statistically sig-nificant better quality of life of the person with dementia [3, 5, 6a, 9]. Another study showed a trend toward better quality of life [4b]. These are all short-period programs: one group program for people with early dementia [3] and four indivi- dual programs with home visits and training [4b, 5, 6a, 9]. These studies also showed positive effects on two other outcomes: mood [3, 6a, 9] and ADL/IADL dependency [4b, 5, 6a]. The three remaining studies showed no statistically signi- ficant effects on the quality of life [6b, 11, 18]. Two of these studies did not show any significant effect [6b, 11]. The third study of the IRR-program with hospitalization did not show effect on quality of life although, it was effective for behavioral problems [18].

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Study or Subgroup 1.4.1 Intensive, limited COTiD Graff 07 TAP Gitlin RDAD Teri ESML Logsdon (1) COPE Gitlin COTiD Voigt-Radloff 1.4.2 Extensive, long lasting Caseman Jansen 1.4.3 Temporary hospitalization IRR Bakker Mean 4 2.4 72.1 39.61 2.2 2.9 2.86 51.32 SD 0.6 0.4 33 5.29 0.5 0.9 0.9 16.01 Total 68 27 68 92 102 54 36 63 Mean 3.1 2.1 50.7 37.75 2.1 3.1 3.02 45.51 SD 0.8 0.5 39.1 6.28 0.5 0.6 0.93 14.56 Total 67 29 72 44 107 50 37 72 IV, Random, 95% CI 1.27 [0.90, 1.64] 0.65 [0.11, 1.19] 0.59 [0.25, 0.93] 0.33 [-0.03, 0.69] 0.20 [-0.07, 0.47] -0.26 [-0.64, 0.13] -0.17 [-0.63, 0.29] 0.38 [0.04, 0.72]

Experimental Control Std. Mean Difference

(1) Logsdon groupprogram

Std. Mean Difference IV, Random, 95% CI

-2 -1 0 1 2

Favours control Favours experimental

Figure 5 Person with dementia outcomes: quality of life

Institutionalization

We studied “institutionalization” or “time to admission” for seven studies [1, 9, 12,

16, 17, 19, 20]. The body of evidence for this outcome is moderate to strong. One short-period program [1], one long-lasting program [12], and two programs with hospitalization [19,20] significantly reduced institutionalization or the time to institutionalization. Another program, the long-lasting Early Home Care Program [16], also had significant effects, although for a subgroup with a Mini-Mental State Examination (MMSE) of less than 23 only. The short-period Reducing Disability program [9] showed a trend toward delaying institutionalization. The Medicare Alzheimer’s Disease Demonstration program [17] showed no significant effects. The data for this outcome were not suited for quantitative comparison. In more recent studies ‘institutionalization’ is less often studied. Next it is more often included as an outcome measure in studies of long-lasting programs.

Effects for the caregiver

Mood

Nine studies involving eight programs measured the mood of the caregiver as a secondary outcome [4a, 5, 6a, 6b, 10, 11, 14, 15, 17] (Figure 6). The body of evidence for this outcome is moderate to strong. Two studies of short-period programs showed significant positive effects after the intervention [4a, 6a]; another study, the longlasting Collaborative Care program, showed significant effects at 18 months, but not at earlier intervals [14]. A study of the Tailored Activity program showed a trend toward positive effects, but statistical significance was not reached [5]. The intervention components of these four programs include

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information, psycho-education, and communication skills training for the caregiver. The other five studies, involving both short-period and long-lasting programs, did not show statistically significant effects [11, 6b, 10, 15, 17]. Four of these programs lack the communication skills-training component [10, 11, 15, 17].

Figure 6 Caregiver outcomes: mood

Perceived burden and competence

Seventeen studies involving 15 programs measured the perception of providing care with burden and/or competence questionnaires: burden [1, 3, 4a, 5, 7, 8a, 8b, 10, 11, 13, 14, 15, 16, 17, 18], competence [4a, 4b, 5, 6a, 6b, 7, 8a, 11, 18], or both [4a, 5, 7, 8a, 11, 18] (Figure 7). The strength of the body of evidence for this outcome is moderate. Thirteen studies, eight short-period programs [1, 3, 4a, 4b, 6a, 7, 8a, 10], four long-lasting programs [13, 14, 16, 17], and one program with hospitalization [18] showed significant positive effects for burden/competence, although not at all moments of follow-up. The programs with statistically significant effects included varying intervention components. The remaining four studies without significant effects involve both short-period programs and long-lasting programs [5, 8b, 11, 15]. It is not clear which intervention components of the 15 programs are effective and which are not. Six of the 17 studies measured burden and perceived competence. In three studies, the scores for the two concepts were in the same direction: both concepts had significant effects [4a, 18] or both had non-significant effects [11]. The other three studies had statistically significant effects for one outcome [5, 7, 8a].

Study or Subgroup 2.1.1 Intensive, limited COTiD Graff 07 ACT Gitlin MFW Ostwald (1) TAP Gitlin COTiD Voigt-Radloff 2.1.2 Extensive, long lasting Coll-care Callahan MADDE Newcomer ROT Onder Caseman Jansen Mean 5.8 8.85 17.16 13.1 10.6 3.1 4.28 0.9 11.2 SD 4.8 5.85 4.07 9.4 7.1 3.9 3.4 3.35 6.84 Total 68 117 51 27 52 84 1705 70 43 Mean 12.6 10.13 17.98 14.3 10.9 4.6 4.42 1 11.2 SD 8.5 5.87 4.84 10.2 6.9 5.6 3.68 3.27 8.11 Total 67 121 30 29 46 69 1597 67 37 IV, Random, 95% CI -0.98 [-1.34, -0.62] -0.22 [-0.47, 0.04] -0.19 [-0.64, 0.27] -0.12 [-0.65, 0.40] -0.04 [-0.44, 0.35] -0.31 [-0.64, 0.01] -0.04 [-0.11, 0.03] -0.03 [-0.37, 0.30] 0.00 [-0.44, 0.44]

Experimental Control Std. Mean Difference

(1) Ostwald groupprogram

Std. Mean Difference IV, Random, 95% CI

-2 -1 0 1 2

Favours experimental Favours control SD: Standard Deviation; CI: Confidence Interval

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Study or Subgroup 2.2.1 Intensive, limited COTiD Graff 07 DFCP Chien (1) ACT Gitlin ESP Gitlin 03 TAP Gitlin ESML Logsdon (2) PIC Hepburn MFW Ostwald (3) COPE Gitlin COTiD Voigt-Radloff 2.2.2 Extensive, long lasting Coll-care Callahan Home Care Dias MADDE Newcomer Early homecare Chu ROT Onder Caseman Jansen 2.2.3 Temporary hospitalization IRR Bakker Mean -104.6 56.9 19 0.43 20.3 1.07 36.17 56.82 7.5 -103 3.5 19 14.1 27.1 2 -47.4 36.75 SD 13.4 14.8 8.5 0.5 8.8 0.7 12.25 11.83 1.9 18.7 5.8 13 8.07 0 11.71 6.44 25.81 Total 67 46 117 89 27 92 120 50 102 50 84 33 1702 27 70 41 60 Mean -88.4 64 21 0.56 20.6 1.04 34.91 55.43 6.9 -108.6 7.7 21.4 14.4 29.5 1.3 -48.4 44.58 SD 13.7 13.1 9.3 0.66 10.4 0.7 14.53 15.91 2.5 17.2 8.7 16.2 8.62 0 12.27 6.4 28.24 Total 65 46 122 101 29 44 46 30 107 47 69 26 1579 21 67 38 65 IV, Random, 95% CI -1.19 [-1.56, -0.82] -0.50 [-0.92, -0.09] -0.22 [-0.48, 0.03] -0.22 [-0.51, 0.07] -0.03 [-0.55, 0.49] 0.04 [-0.32, 0.40] 0.10 [-0.24, 0.44] 0.10 [-0.35, 0.55] 0.27 [-0.00, 0.54] 0.31 [-0.09, 0.71] -0.58 [-0.90, -0.25] -0.16 [-0.68, 0.35] -0.04 [-0.10, 0.03] Not estimable 0.06 [-0.28, 0.39] 0.15 [-0.29, 0.60] -0.29 [-0.64, 0.07]

Experimental Control Std. Mean Difference

(1) Chien partly groupprogram (2) Logsdon groupprogram (3) Ostwald groupprogram

Std. Mean Difference IV, Random, 95% CI

-2 -1 0 1 2

Favours experimental Favours control

Figure 7 Caregiver outcomes: burden and/or competence

Quality of life

Ten studies measured the quality of life of the caregiver [1, 4a, 4b, 6a, 6b, 8a, 11, 13, 15, 20] (Figure 8). The body of evidence for these studies is moderate. Seven of the ten studies found statistically significant effects [1, 4a, 4b, 6a, 8a, 13, 20]. The programs are from all three categories. These seven studies also showed significant effects on other outcomes. Three other studies showed no statistically significant effect on the quality of life of the caregiver [6b, 11, 15]. Two of the programs, Case Manage-ment [11] and COTiD program [6b] showed no significant effects on any outcome, and the Reality Orientation program only showed significant effects on outcomes for the person with dementia [15]. The intervention components of this program focus primarily on the “cognition” of the person with dementia, and do not involve caregiver feelings.

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