International Perspectives on Nonpharmacological Best Practices for Dementia Family Caregivers: A Review

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International Perspectives onNonpharmacological Best Practices forDementia Family Caregivers: A ReviewDolores Gallagher-Thompson PhD a , Yuan Marian Tzuang MSW a ,Alma Au BSc MSc MScoSci PgD PhD b , Henry Brodaty DSc c , GeorginaCharlesworth ClinPsyD PhD d , Rashmi Gupta MSW PhD e , Sang E. LeeMSW PhD f , Andrés Losada PhD g & Yea-Ing Shyu RN PhD ha Stanford University, School of Medicine , Stanford , California , USAb Hong Kong Polytechnic University , Hong Kong , Chinac University of New South Wales , Sydney , Australiad University College London , London , United Kingdome San Francisco State University , San Francisco , California , USAf San Jose State University , San Jose , California , USAg Universidad Rey Juan Carlos , Madrid , Spainh Chang Gung University , Gueishan , Taoyuan , TaiwanPublished online: 01 Jun 2012.

To cite this article: Dolores Gallagher-Thompson PhD , Yuan Marian Tzuang MSW , Alma Au BSc MScMScoSci PgD PhD , Henry Brodaty DSc , Georgina Charlesworth ClinPsyD PhD , Rashmi Gupta MSW PhD ,Sang E. Lee MSW PhD , Andrés Losada PhD & Yea-Ing Shyu RN PhD (2012) International Perspectives onNonpharmacological Best Practices for Dementia Family Caregivers: A Review, Clinical Gerontologist,35:4, 316-355, DOI: 10.1080/07317115.2012.678190

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Clinical Gerontologist, 35:316–355, 2012Copyright © Taylor & Francis Group, LLCISSN: 0731-7115 print/1545-2301 onlineDOI: 10.1080/07317115.2012.678190

REVIEW ARTICLE

International Perspectives onNonpharmacological Best Practices forDementia Family Caregivers: A Review

DOLORES GALLAGHER-THOMPSON, PhDand YUAN MARIAN TZUANG, MSW

Stanford University School of Medicine, Stanford, California, USA

ALMA AU, BSc, MSc, MScoSci, PgD, PhDHong Kong Polytechnic University, Hong Kong, China

HENRY BRODATY, DScUniversity of New South Wales, Sydney, Australia

GEORGINA CHARLESWORTH, ClinPsyD, PhDUniversity College London, London, United Kingdom

RASHMI GUPTA, MSW, PhDSan Francisco State University, San Francisco, California, USA

SANG E. LEE, MSW, PhDSan Jose State University, San Jose, California, USA

ANDRÉS LOSADA, PhDUniversidad Rey Juan Carlos, Madrid, Spain

YEA-ING SHYU, RN, PhDChang Gung University, Gueishan, Taoyuan, Taiwan

Portions of this article are adapted from a report on caregivers submitted to the WorldHealth Organization (WHO) in December 2011 by several of the authors of this article. Thismaterial is used with WHO permission. Preparation of this article was supported partiallyby a grant from the Spanish Ministry of Science and Innovation (PSI2009-08132) and by theresources of the Stanford Geriatric Education Center (UB4HP19049).

Address correspondence to Dolores Gallagher-Thompson, 1215 Welch Road, Modular B,Stanford, CA 94305-5403, USA. E-mail: [email protected]

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International Nonpharmacological Interventions 317

This review begins by highlighting the fact that dementia is truly aglobal problem at this time, with incidence and prevalence ratesrising rapidly in most parts of the world and only expected toincrease. Along with this comes the growing demand for programsand services targeted to support both the person with dementiaand his or her family caregivers. Around the globe such pro-grams are being developed, evaluated, and put into practice, withgovernment funding and needed infrastructures to support them.However, the many pressing needs of family caregivers for servicesto reduce their burden and improve quality of life for themselvesand their relative far outstrip available programs—even in highlydeveloped countries such as the United States, United Kingdom,and Australia. This is even more so the case in less developedcountries and regions such as China, India, Africa, and Southand Central America. We conducted an extensive search of exist-ing databases and publications related to this topic, and in thisarticle we both review and critique existing programs and servicemodels. There are descriptive sections on evidence-based programsand practices, as well as discussion of promising areas for futureresearch. In addition, we discuss some of the formidable barri-ers that prevent or delay access to care in even the more developedcountries. Finally, we conclude with a set of recommendations thatwe believe will enhance growth and productivity in this field.

KEYWORDS aging, Alzheimer’s disease, carers, caregivers,caregiving, dementia, nonpharmacological treatments

DEMENTIA IS A GLOBAL ISSUE

As the number of older persons increases worldwide, dementia is becomingan increasingly challenging global public health concern. In this article, weuse the term “dementia” to refer to Alzheimer’s disease (AD) and relateddisorders (e.g. frontal temporal dementia, vascular dementia), unless oth-erwise specified. Of note is that most of the research has been conductedwith patients with known AD because it is the most prevalent of the varioustypes of dementia. According to a recent Alzheimer’s Disease Internationalreport (2009), it is estimated that 36 million people worldwide are livingwith dementia, with numbers doubling every twenty years to 66 million by2030, and 115 million by 2050. Table 1 depicts estimates of the prevalenceof dementia in various regions of the world.

Globally, many of these dementia patients are cared for by familymembers/caregivers, who are referred to as “informal” caregivers or carers.In the United States alone, 14.9 million people currently care for someonewho has dementia (Family Caregiver Alliance, 2011), and this number will

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318 D. Gallagher-Thompson et al.

TABLE 1 Estimates of the Prevalence of Dementia by Region

Age Group Standardizedprevalence

for 60+Region 60–64 65–69 70–74 75–79 80–84 85–89 90+Asia

Australasia 1.8 2.8 4.5 7.5 12.5 20.3 38.3 6.91Asia Pacific, High

Income1.0 1.7 2.9 5.5 10.3 18.5 40.1 5.57

Asia, East 0.7 1.2 3.1 4.0 7.4 13.3 28.7 4.19Asia, South 1.3 2.1 3.5 6.1 10.6 17.8 35.4 5.78Asia, Southeast 1.6 2.6 4.2 6.9 11.6 18.7 35.4 6.38Asia, Central 0.9 1.3 3.2 5.8 12.1 24.7 5.75Oceania 0.6 1.8 3.7 7.0 14.4 26.2 6.46

EuropeEurope, Western 1.6 2.6 4.3 7.4 12.9 21.7 43.1 6.92Europe, Central 0.9 1.3 3.3 5.8 12.2 24.7 5.78Europe, Eastern 0.9 1.3 3.2 5.8 11.8 24.5 5.70

The AmericasNorth America

(USA only)1.1 1.9 3.4 6.3 11.9 21.7 47.5 6.46

Latin America 1.3 2.4 4.5 8.4 15.4 28.6 63.9 8.48Caribbean 1.3 2.6 4.9 8.5 16.0 33.2 8.12

AfricaN. Africa/Middle

East1.0 1.6 3.5 6.0 12.9 23.0 5.85

Sub-SaharanAfrica, Central

0.5 0.9 1.8 3.5 6.4 13.8 3.25

Sub-SaharanAfrica, East

0.6 1.2 2.3 4.3 8.2 16.3 4.00

Sub-SaharanAfrica, Southern

0.5 1.0 1.9 3.8 7.0 14.9 3.51

Sub-SaharanAfrica, West

0.3 0.86 2.72 9.59 2.07

Source: This table was modified from Tables 1.5 and 1.6, Alzheimer’s Disease International 2009 WorldAlzheimer Report, pp. 36–37.

only rise as people around the world live longer into old age. As Table 1clearly shows, dementia prevalence is age-related in that persons over age85 have more than double the risk of persons in their sixties and seven-ties. This association is found in all countries for whom data are available.For example, in Taiwan, the current population of people with dementiais over 170,000, a number that is expected to exceed 620,000 by 2056,or an increase of 10,000 people every year (Taiwan Alzheimer’s DiseaseAssociation, 2012). In Korea, it is estimated that there are over 500,000 olderadults with dementia in 2012 (9% of older population) and the number willreach over one million in 2027 (Korea Ministry of Health & Welfare, 2008).Similar data exists in the United Kingdom. A recent update of the DementiaUK Report commissioned by the Alzheimer’s Society shows that the currentpopulation of people with dementia in the UK is around 750,000. This isexpected to rise to 1 million by 2021 and 1.7 million by 2051 (Alzheimer’sSociety, 2012). Needless to say, dementia caregiving is a global experience.

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Multiple studies have shown that caring for a person with dementia,although it can be rewarding, usually has significant negative effects on thecaregivers’ physical and emotional health (Andren & Elmstahl, 2005; Beachet al., 2005; Brodaty & Hadzi-Pavlovic, 1990; Coon et al., 2004; Prince et al.,2011; Sorensen, Duberstein, Gill, & Pinquart, 2006). For example, prevalenceof depressive symptoms is high in virtually all studies, averaging 30% to 50%,depending on methodology and measures used (Cuijpers, 2005; Gallagher,Rose, Rivera, Lovett, & Thompson, 1989). Physical health impact includescompromised immune system (Vitaliano, Zhang, & Scanlan, 2003) and dys-regulated cortisol (a physiological marker of stress) (Holland, Thompson,Tzuang, & Gallagher-Thompson, 2010; Holland et al., 2011). In addition,poorer health maintenance practices (Rabinowitz & Gallagher-Thompson,2007), reduction in subjective well-being (related to increasing social iso-lation), financial strain, and early nursing home placement of the patientwith dementia have also been reported (Brodaty & Donkin, 2010; Carretero,Garces, Rodenas, & Sanjose, 2009; Etters, Goodall, & Harrison, 2008).

As a result, there is considerable interest worldwide in helping thesefamily caregivers to decrease the stress and negative impacts of caregiving.The primary reasons to develop and disseminate cost-effective interven-tions for dementia family caregivers are both to ease psychological (andother forms of) distress that are common in this situation, and to enablethe family member to remain in the caregiving role longer (thus avoidingor delaying costly institutional placement) and in a more productive man-ner (thus avoiding lost time at work and/or reduced productivity). For thepurpose of this article, we will focus solely on the efficacy and effective-ness of nonpharmacological interventions of family caregivers affected byAlzheimer’s disease.

Before reviewing these interventions, we first point out that there is a“treatment gap” for dementia patients living in different parts of the world.There is unequal access to services (such as receiving formal diagnosis, care,and some form of support), both for patients and their family caregivers toreceive caregiver-focused interventions (Alzheimer’s Disease International,2011; Prince et al., 2011). In some places of the world such as India, thereare few resources and infrastructure to support dementia caregivers. Even inhigher-income countries, patients and caregivers do not always receive thecare they need. (EUROFAMCARE, 2006)

WHAT ARE SOME KNOWN BARRIERS TO CARE AND ACCESSISSUES FOR DEMENTIA PATIENTS AND THEIR FAMILIES?

1. Education of health care providers: Of great significance across the globeis under-preparation of physicians and other health care providers to rec-ognize dementia and institute appropriate interventions (Chen, Foo, &

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Ury, 2002; Nielsen-Bohlman, Panzer, Hamlin, & Kindig, 2004; Tsolakiet al., 2010; Zarcadoolas, Pleasant, & Greer, 2005). This problem hasalso been pointed out in recent published clinical guidelines, for exam-ple, MICINN (2011). Moreover, the IMPACT survey, (conducted with1,000 members of the general public and 250 dementia caregivers infive European countries—France, Germany, Italy, Spain, and the UnitedKingdom–found that early signs and symptoms of dementia are difficultto detect in primary care settings as physicians lack necessary knowl-edge and may also have negative attitudes toward dementia (Wortmann,Andrieu, Mackell, & Knox, 2010). As well, there is often a lack of appro-priate services after the diagnosis has been made. For example, in Spain,although services for family caregivers exist, they are not widely availableand interventions like psychotherapy or psychoeducation are not com-monly offered (Mateos, Franco, & Sanchez, 2010). A national dementiareport from India (Shaji et al., 2010) brought attention to the lack oftrained health care providers there; and lack of infrastructure to scale upservices; lack of funds for dementia services, research, and training; andlack of public policy initiatives. Geriatric care in India is scarce and this issorely needed so that a timely, accurate diagnosis can be made whenan elderly person exhibits confusion and behavior problems (Gupta,2009). These barriers appear to be quite representative of those foundin countries all around the world.

2. Low health literacy and/or poor language proficiency also contributesubstantially to access (Kwon & Kim, 2011; Nielsen-Bohlman et al.,2004; Zarcadoolas et al., 2005). The range of skills required for ade-quate health literacy (understanding medical terminology and informationclearly enough to be able to follow directions, take medications, etc.,without errors) are developed over a lifetime (US Department of HealthServices, 2009). Even when patients have full command of the languagein which the health information is presented, they can still have lowhealth literacy because of limited exposure to health-related language andinstructions (Nielsen-Bohlman et al., 2004). Data from the United Statesclearly show older adults are more likely to have low health literacydue to limited education (Family Caregiver Alliance, 2007); this is evenmore common among US ethnic and racial minority older adults withpoor English proficiency (Paasche-Orlow, Parker, Gazmararian, Nielsen-Bohlman, & Rudd, 2005). This pattern is found in other parts of the worldas well, for example, in Taiwan and Spain (Lee, Tsai, Tsai, & Kuo, 2010;MICINN, 2011). In response, Spain has made specific reference in clinicalguides to the importance of checking the degree to which the informa-tion provided by health care providers has been correctly understoodby patients and families, recommending the use of videos, booklets,internet and translators for assuring a correct understanding of theproblem.

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3. Culturally-based beliefs about dementia: Cultural beliefs can stronglyinfluence how the disease is perceived (as a medical illness vs. a men-tal illness vs. simply normal aging); whether or not assistance is soughtand from whom (within the family; outside practitioners; the medicalestablishment; nontraditional healers; herbalists etc.; (Lai & Chung, 2011;Nielsen-Bohlman et al., 2004; Nikmat, Hawthorne, & Ahmad Al-mashoor,2011; Parry & Weiyuan, 2011); and how caregiving is appraised and dealtwith (Yeo & Gallagher-Thompson, 2006). Dementia is often not concep-tualized as an illness—in fact, it is often seen as part of normal agerelated change, about which little can or should be done. On the otherhand, sometimes dementia is seen as “retribution for sins of the ances-tors” (beliefs such as this are more commonly found in non-Europeancountries and cultures). If so, then it is unlikely that family members willapproach medical or social care providers as the first point of contactfor intervention. In most Asian cultures (i.e., Chinese, Korean, Malaysian,and Asian Indian) and in some southern European countries (e.g., Italyand Spain), it is common for families to take full responsibility for olderadults with dementia. Those caregivers with strong familism values orfilial piety are very unlikely to reach outside the family for help (Losadaet al., 2010). Along with that is a tendency to be extremely reluctantto discuss dementia and related caregiving issues to persons outside theimmediate family, due to fears of “losing face.” This often results in refusalof outside help, even when it might be very much needed (Alzheimer’sDisease International, 1999; Etters et al., 2008; Kwon & Kim, 2011). Thistype of coping results in less social and emotional support for caregivers.It is part of a vicious cycle in which not being able to acknowledgethe disease for what it is leads to inability to access needed services.An additional belief held by some caregivers is that dementia has spiri-tual, psychological, or social causes, not medical causes (Alagiakrishnan,2008; Mukadam, Cooper, & Livingston, 2011). If so, then treatment willinvolve alternative or complementary medications or culturally specifichome remedies, rather than medication and behavior management orbehavior management.

4. Lack of adequate knowledge about AD and related disorders amongpatients and family caregivers. If cultural beliefs are unable to accom-modate the medical model and if health literacy is low, there is likelyto be a concomitant lack of accurate information about the importanceof diagnosing and treating AD, as well as the importance of provid-ing supportive care to family members doing the bulk of day-to-daycaregiving (Alzheimer’s Australia, 2008; Low & Anstey, 2009). The FacingDementia Survey (Bond et al., 2005) noted these and other barriers tobe common among the 2,500 persons surveyed in France, Germany,Italy, Poland, Spain and the United Kingdom. Findings underscoredthe lack of information about dementia (what the warning signs are;

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how to get a diagnosis; benefits of treatment and care) and calledfor greater emphasis on this as a government-recognized health carepriority.

5. Lack of support-seeking behavior. Obtaining emotional support fromfamily members has been found to have a strong relationship withmany indices of caregiver well-being, such as enhanced life satisfac-tion, enhanced self-efficacy, and decreased depressive symptoms (Auet al., 2009). Yet not all caregivers seek support from family members.For example, Au, Shardlow, Teng, Tsien, and Chan (in press) foundthat Hong Kong Chinese caregivers prefer to tackle problems by them-selves rather than to seek help from others, as they feel embarrassedand uncomfortable about seeking and receiving support. Such patternsin some modern Asian societies may be a result of the residual influenceof traditional Chinese values to uphold propriety, harmony and socialobligations (Hwang & Han, 2010).

In summary, there are multiple barriers to care for dementia patientsand their families around the globe. Some are systemic (governments’ lackof funding and development of the needed infrastructure to support seri-ously addressing this major public health problem). Others pertain to lackof current, state-of-the-art information about diagnosis and treatment (notonly how to do these things, but also their intrinsic value for the patientand family). Still other barriers are cultural issues that may relate to minoritystatus in the country, as well as to educational status and degree of com-petence to understand health related literature and instructions. Addressingthese barriers will take considerable time and effort.

NONPHARMACOLOGICAL INTERVENTIONSFOR DEMENTIA FAMILY CAREGIVERS

A recent comprehensive review of pharmacological interventions for thedementia patient found that pharmacological therapies are not particularlyeffective for management of neuropsychiatric symptoms of dementia (Sink,Holden, & Yaffe, 2005). There is no current review available on the use ofpharmacological treatments with the caregivers of dementia patients. In thisarticle, we focus exclusively on nonpharmacological programs that have“worked” for dementia family caregivers and for which an evidence baseexists in the published literature.

METHODS: HOW ARTICLES WERE SELECTEDFOR THIS REVIEW

Information was obtained by searches of the following electronic databases: PubMed, Medline, PsychINFO, and the Cochrane Dementia and

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Cognitive Improvement Group Specialized Register, using the followingsearch terms: dementia, carers, caregivers, family caregivers, Alzheimer’s dis-ease, nonpharmacological interventions, evidence-based interventions, anddementia policy. The search included key articles from January 1986 toDecember 2011 with an emphasis on those published in the past decade.We also consulted major reviews and meta-analyses done primarily in theUnited States but also included key papers from other parts of the worldidentified by the co-authors of this paper. Only English language publica-tions were reviewed and that is a limitation we wish to acknowledge here.Our aim was to be as inclusive as possible in finding related papers from allover the world; we were guided by the requirements of the WHO Report onCaregivers, to be released in Spring 2012.

RESULTS: EVIDENCE-BASED PROGRAMS FORDEMENTIA CAREGIVERS

There is considerable interest worldwide in the efficacy and effectiveness ofnonpharmacological interventions for treatment of both patients and familycaregivers affected by AD. The following is an overview of evidence-basedinterventions that we found in the literature (see Table 2).

Individual and Family Counseling

A three-country randomized controlled trial conducted in Australia, theUnited Kingdom, and the United States (Mittelman, Brodaty, Wallen, &Burns, 2008) was both a replication and an extension of earlier researchpublished by Mittelman and colleagues (Mittelman, Ferris, Schulman,Steinberg, & Levin, 1996; Mittelman, Haley, Clay, & Roth, 2006; Mittelman,Roth, Clay, & Haley, 2007). The intervention consisted of five sessions ofindividual and family counseling within 3 months of enrollment and as-needed availability of ad hoc telephone counseling, all provided by trainedsocial workers. In this study, donepezil (a cholinesterase inhibitor known todelay progression of symptoms of AD), was prescribed free of charge to thepersons with dementia (PWD) for up to 24 months. While the structure waspredetermined, content varied according to the needs of the spouses whoenrolled. A total of 158 spouse caregiver/patient dyads enrolled across thethree sites. Results indicated both immediate and long-term improvementin depression scores on a self-report measure of distress. Despite only fivesessions of counseling over 3 months, the benefits on depression becamegreater over 2 years of follow-up, i.e., greater divergence of scores betweenthe intervention and control groups. Similar improvements were found inearlier studies by Mittelman and colleagues, leading them to conclude that acomprehensive individualized program that provides relatively long term

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TABLE 2 Examples of Effective (Evidence-Based) Interventions for Dementia FamilyCaregivers

Interventions Brief Description Key Citations

Individual and familycounseling

Individual and familycounseling provided bytrained providers fortreatment of caregiverdepression and managingstress.

Mittelman et al., 2008;Mittelman et al., 1996;Mittelman et al., 1993;Mittelman et al., 2006;Mittelman et al., 2007

Psychoeducationalprograms,∗ for example:a. Coping with Caregivingb. Savvy Caregiving

Teach caregivers a set ofbehavioral and cognitiveskills for coping withcaregiving demands andstress using a structuredformat.

Au, Li, et al., 2010; Burgioet al., 2009;Gallagher-Thompsonet al., 2007; Hepburnet al., 2007; Losada,Márquez-González, &Romero-Moreno, 2011;Martín-Carrasco et al.,2009; Ostwald et al., 1999

Specialized skill training, forexample:a. Behavior managementb. STAR-Cc. In-home modifications

Trainings that focus on aspecific skill such as homemodifications, managingdementia patients’ difficultbehaviors, dealing withfrustrations, managing sleepdisruption, and promotionof exercises to alleviatestress.

Coon et al., 2003; Farranet al., 2004; Gitlin et al.,2005; Gitlin et al., 2008;Gitlin et al., 2003; Gonyeaet al., 2006; Huang et al.,2003; King et al., 2002;McCurry et al., 2005;Steffen, 2000; Teri et al.,2003; Teri et al., 1997;Teri et al., 2005

Multi-component programsa. REACH IIb. The Dementia Carers’Programme in Australia

A multi-component programthat consist of (1) homevisits that createindividualized plans for eachcaregiver to manage theirstress, (2) “health passport”for recording their healthinformation; and, telephonesupport group calls; andaccess to various localresources.

Belle et al., 2006; Brodaty &Gresham, 1989; Brodatyet al., 1997; Hilgemanet al., 2009;Montoro-Rodriguez &Gallagher-Thompson,2009

Psychotherapy/cognitivebehavioral therapy

Use of cognitive behavioraltherapy to treat caregiverswho are clinically depressedor have other significantmental health problems.

Charlesworth & KatharinaReichel, 2004;Gallagher-Thompson &Steffen, 1994

∗Psychoeducational and/or behavior management training programs have been used in the UnitedKingdom, Spain, other parts of Europe, India, and Australia and current work is ongoing in other regionsof the world (e.g., Hong Kong).

support are effective both in reducing nursing home placement and inimproving caregivers’ quality of life (Mittelman et al., 1996, 1993, 2006).Interestingly, although decreases in caregiver depression scores were similaracross the three sites, nursing home admission was significantly lower in the

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intervention group only in Australia but not in the United States or UnitedKingdom. The authors hypothesized that other factors such as availabilityand cost of institutional care and of community care may have mediatedthese effects (Brodaty, Mittelman, Gibson, Seeher, & Burns, 2009). However,it should be noted that only spouse caregivers were included and the major-ity were Caucasian/White in terms of ethnicity and race. These factors maylimit generalizability of results.

Psychoeducational Programs

Numerous studies have shown that psychoeducational programs have signif-icant effects on caregivers’ well-being, including fewer depressive symptomsand less reported stress related to caregiving, although delay of institu-tional placement has not yet been consistently demonstrated (see reviewsby Gallagher-Thompson & Coon, 2007; Olazaran et al., 2010; and Sorensenet al., 2006). An example of an effective psychoeducational program thatfocuses on teaching caregivers improved behavioral and cognitive skillsfor coping with their situation is the “Coping with Caregiving” program(and its variants) developed by Gallagher-Thompson and colleagues. It hasbeen effective not only with Caucasian/White caregivers but also withHispanic/Latino and Chinese American dementia family caregivers in theUnited States. It has been adapted for use in Spain (Losada Baltar, IzalFernandez de Troconiz, Montorio Cerrato, Marquez Gonzalez, & Perez Rojo,2004); the United Kingdom (work in progress with the National HealthService); Australia (work in progress with government in New South Wales)and Hong Kong China (Au, Li, et al., 2010). Similar programs such as“Savvy Caregiving” and “REACH Out” teach comparable coping skills in ahighly structured format (Burgio et al., 2009; Hepburn, Lewis, Tornatore,Sherman, & Bremer, 2007; Hepburn, Tornatore, Center, & Ostwald, 2001;Ostwald, Hepburn, Caron, Burns, & Mantell, 1999). However, these latterprograms have not yet been used outside the United States or been adaptedfor use with culturally diverse caregivers.

Generally these psychoeducational programs teach a specific set ofskills (cognitive: challenging unduly pessimistic thoughts about caregivingand behavioral: learning to increase everyday positive activities to coun-terbalance negative mood states) over a specific period of time, e.g. 63 to 12 weeks. Skills are typically taught in small groups (though someadaptations have done this one-on-one) and leaders are generally not profes-sionally trained mental health staff, but specially trained, selected individualsfrom the local community, or cultural or ethnic group being recruited.Manuals detailing the structured protocol for “Coping with Caregiving”exist in several languages including: English, Spanish, Chinese, Japanese,and /or Farsi, depending on the program. “Savvy Caregiving” has beentranslated into Spanish as well (Belle et al., 2006; Gallagher-Thompson

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et al., 2003; Gallagher-Thompson, Gray, Dupart, Jimenez, & Thompson,2008; Gallagher-Thompson et al., 2007; Gallagher-Thompson, Wang et al.,2010).

Specialized Skill Training Programs

Several specialized skill training programs have been studied in randomizedtrials in the United States. For example, there are well-validated in-homeprograms that teach caregivers how to modify the home environment forsafety, as well as how to increase positive activities of the person withdementia through use of occupational therapy techniques (Gitlin, Hauck,Dennis, & Winter, 2005; Gitlin et al., 2008, 2003). Other programs teachfamily (and/or paid staff) caregivers straightforward skills to modify prob-lem behavior of the PWD (Farran et al., 2004; Gonyea, O’Connor, & Boyle,2006; Teri, Logsdon, Uomoto, & McCurry, 1997; Teri, McCurry, Logsdon, &Gibbons, 2005). More recently, success of the STAR-C program for identify-ing, reducing, and managing difficult behaviors of the PWD was reported(Logsdon, McCurry, & Teri, 2005). They found that after eight in-homemeetings (provided by persons with master’s degrees in social work orpsychology and at least 1 year of experience working with older adultswho were specifically trained in the intervention protocol), caregivers’depression, burden, and reactivity to behavioral problems was significantlyreduced (compared to the control condition). This model has been adoptedby the Veterans Administration Health Care System to be implemented intheir long term care settings in the United States. In Taiwan, a home-based caregiver training program was developed based on the ProgressivelyLowered Stress Threshold Model (PLST) and the concept of partnership withfamily caregivers to strengthen the caregiver’s competence in understanding,identifying and managing of the behavioral problems of the PWD (Huang,Shyu, Chen, Chen, & Lin, 2003). This program was found effective bothin decreasing problem behaviors, and improving caregivers’ self-efficacy.The utility of these and other behavioral interventions was noted by Woods(2010) in his review of nonpharmacological therapies for PWD and theircaregivers.

Other studies (generally done with small samples) focus on specificskill training for health maintenance. For example, managing sleep dis-ruption (which is a common complaint of this group) (McCurry, Gibbons,Logsdon, Vitiello, & Teri, 2005) or frustration (Coon, Thompson, Steffen,Sorocco, & Gallagher-Thompson, 2003; Steffen, 2000) which is also anall-too-common negative emotion that caregivers experience. A few smallstudies have included promotion of exercise for caregivers as a way tomanage stress (Castro, Wilcox, O’Sullivan, Baumann, & King, 2002; King,Baumann, O’Sullivan, Wilcox, & Castro, 2002; Teri et al., 2003). All of thesegenerally report improvement in mood and other indices of quality of life in

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caregivers; however, they typically are not available in other languages norhave they been exported to other countries.

Multi-Component Intervention Programs

REACH II is one example of this type of program. This multi-site, multi-ethnic study was conducted in five regions in the United States; one commonintervention protocol was used in the randomized trial (active interven-tion was compared to a minimal contact control condition) with trainedinterventionists and identical outcome measures across sites. The programwas offered in Spanish as well as English, depending on site enrollment.A total of 642 dementia family caregivers participated. The program con-sisted of up to nine home visits in which behavior and stress management“action plans” were individualized for each participant and up to three tele-phone support group phone calls arranged, in which caregivers discussedcommon problems. All caregivers in the active condition also receiveda “health passport” for recording their health information; a binder ofresources to supplement the formal program; and a telephone modifica-tion that allowed speed dialing of common numbers (e.g., local chapterof the Alzheimer’s Association). As expected, caregivers in the interventioncondition improved to a significantly greater extent on the omnibus out-come “quality of life” measure used to assess outcome. It is noteworthythat Hispanic/Latino caregivers showed the greatest positive change, whileAfrican Americans showed the least improvement. Trends were noted fordelay in institutional placement but the relatively short follow-up period(6 months) was not long enough for the trends to become significant (Belleet al., 2006). Related REACH II papers include those by Czaja, Gitlin, Zhang,Shulz, & Gallagher-Thompson (2009), Hilgeman et al. (2009), and Montoro-Rodriguez & Gallagher-Thompson (2009), which address other aspects ofthis rich and extensive data set.

Since the original REACH II outcome study was published by Belle et al.(2006), numerous dissemination studies have begun. Two organizations, theAdministration on Aging (www.aoa.gov) and the Rosalynn Carter Institutefor Caregiving (http://rci.gsw.edu), both US based, funded these dissemi-nation projects in different regions of the country. A published example ofhow REACH has been adapted for use in the State of Alabama, US, can befound in Burgio et al. (2009).

Another example can be found in Australia, where a comprehensivemulticomponent 12-day residential program for community-dwelling PWDand their family caregivers demonstrated reduction in caregiver psychologi-cal morbidity, delay in nursing home admission (Brodaty & Gresham, 1989;Brodaty, Gresham, & Luscombe, 1997), and cost savings (Brodaty & Peters,1991).

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Psychotherapy

There are only a handful of randomized trials that have investigated variousforms of psychotherapy to reduce caregivers’ distress. The most commonform of therapy studied is cognitive/behavioral therapy (CBT). CBT wasdeveloped over 30 years ago to treat depression but has been found effec-tive in the treatment of many other mental disorders as well. Charlesworth &Katharina Reichel (2004) and Marriott and colleagues (2000) in the Unitedkingdom and Gallagher-Thompson & Steffen (1994) in the United States allreported positive findings using short-term CBT with clinically depresseddementia family caregivers. Akkerman and Ostwald (2004) found CBT to beeffective to treat anxiety in dementia carers. However, CBT requires highlytrained, specialized staff and therefore is the most costly of the programsreviewed. General consensus is that it is best reserved for those with sig-nificant mental health problems who likely would not benefit from a groupprogram or from one that taught only certain specialized skills (Olazaranet al., 2010; Woods, 2010).

An Acceptance and Commitment Therapy (ACT)–based intervention(derived from CBT) has also been conducted with dementia caregivers(Márquez-González, Romero-Moreno, & Losada, 2010), showing promisingresults. Considering that experiential avoidance is linked with caregivers’distress (Spira et al., 2007), and the number of unchangeable losses andstressors that are associated with dementia caregiving, helping caregiversto accept external (e.g., components of problematic behaviors) or inter-nal events (e.g., emotions or thoughts) seems to be a relevant challengefor intervention with caregivers (Márquez-González et al., 2010). In addi-tion, “targeting values in psychotherapeutic interventions with caregivers,helping them to become more aware of them, to clarify and define them,and to develop actions that bring them closer to them, could be a promis-ing pathway toward improving the effectiveness of such interventions”(Márquez-González et al., 2010).

INTERVENTIONS USING TECHNOLOGY

Although no strong evidence base exists at the moment, this is an area ofrapidly expanding interest and new research programs are being developedand implemented all the time. This is made possible by recent advancesin communications technology. The most frequently used, and studied,forms of technology for service delivery are telephones and videophones(Magnusson, Hanson, & Borg, 2004). There are many reasons to think thattechnology will be effective and helpful to many caregivers around theworld—particularly those in poorer nations—if applications can be devel-oped that can be used on such devices as “smart phones” which areincreasingly common throughout the world.

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Telephone/Videophone Consultation and/or Treatment

Most telephone support is done by professional practitioners who pro-vide counseling and support services to family caregivers, with the goalbeing to reduce stress and promote optimal coping (Magnusson et al.,2004). For example, one older US program used an approach called thePREP model in which family caregivers worked together with a nursefacilitator who supported them in making decisions via telephone callsand, to a lesser extent, home visits (Archbold, Stewart, & Miller, 1995).In Hong Kong, the Telephone-Assisted Pleasant Event Scheduling (TAPES)was piloted to enhance the psychological well-being of dementia caregivers.Findings suggest that a short-term telephone-assisted intervention programemploying behavioral activation procedures was successful in improvingthe mood of dementia caregivers. These findings highlight the potential oftime-limited and telephone-assisted intervention as an effective model ofcare to enhance accessibility and overcome barriers of care for dementiacaregivers. Pleasant event scheduling (which underscores coping flexibil-ity) can have a strong impact in the Chinese culture (Au, Wong, Leung,Thompson, & Gallagher-Thompson, 2010). Other recent studies found thatvideo based interventions yielded results similar to face-to-face supportgroups, in terms of improving the mental health status of the caregivers andlowering caregiving related stress (Marziali & Garcia, 2011). In a videophoneintervention pilot study, researchers assessed the feasibility and effective-ness of providing personal, real-time support for caregivers in their ownhomes via collaborative videophone technology. Clinicians were able to seethe caregivers without having to do home visits, thus increasing the num-ber of caregivers that could be helped in one day (Finkel et al., 2007).Similar results were reported by researchers at the University of Texas whoused videoconferencing technology to provide services to patients and fam-ilies in the Choctaw (Indian) Nation (Weiner, Rossetti, & Harrah, 2011).Another successful example is the computer-mediated automated interac-tive voice response (IVR) intervention by Mahoney (Mahoney, Tarlow, &Jones, 2003) that was designed to assist family caregivers to manage dis-ruptive behaviors related to the patient’s dementia. Of note is that thesestudies predated the now common use of Skype or other emerging video-conferencing technologies. A recent New York Times article (Hoffman,2011) described the growing practice of therapy via Skype and encryptedtherapy sessions through third-party sites. According to the article, psy-chologists say that certain conditions might be well suited for treatmentonline, such as depression, using an evidence-based treatment programsuch as cognitive-behavior therapy. Since depression is very common amongdementia family caregivers, it will probably not be too long until psychother-apy will, in fact, be delivered through such a mechanism, to appropriatelyevaluated caregivers. In the United Kingdom the government launched the

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Improving Access to Psychological Therapies (IAPT) Programme, whichhas led to a dramatic overhaul of the provision of psychological thera-pies for all adults. One aspect of IAPT provision is supported self-helpwhich includes providing free access to online CBT treatments for mildto moderate anxiety and depression such as “FearFighter” and “Beatingthe Blues.” As the IAPT program is being extended, there is an inten-tion that there should be specific interventions for people with long termconditions (Department of Health, 2011), and the Department of Healthis currently consulting with interest groups on ways to extend training inthe IAPT workforce in support of carers of people with dementia. Thefact that it will most likely be less expensive, and more accessible, thantraditional face-to-face therapy may enhance its desirability to dementiafamily caregivers who heretofore may not have been able to avail them-selves of needed services along these lines due to cost and/or lack ofaccessibility.

Telehealth

In the United States, many medical providers now offer their patients accessto electronic health records and web-based communication between patientsand their medical team. These technologies allow patients and providers tocommunicate electronically to obtain follow-up of test results including lab-oratory and radiology results, ask questions, schedule appointments, renewprescriptions, and collect information before a visit (Hassol et al., 2004;Weingart, Rind, Tofias, & Sands, 2006). In many other parts of the world,attention has also been devoted to the construction of e-health infrastruc-tures using information and computer technology. China, for example, hadsupported some demonstration projects that enabled the setup of an eco-nomical, practical, reliable system so that medical records and laboratoryresults could be reviewed anywhere (Zhao et al., 2010). A multi-clinic ran-domized controlled trial in Malaysia reported that a text messaging remindersystem was effective in improving attendance rate in primary care (Leonget al., 2006). These and similar interventions could simplify the busy day-to-day life of the typical dementia family caregiver, and improve the quality ofhealth care that both patient and caregiver receive.

In the United Kingdom the “3millionlives” program (http://www.3millionlives.co.uk) has recently been launched to extend the implementa-tion of telehealth and telecare following the successful Department of Healthfunded “Whole System Demonstrator” project in which hospital admissionsand mortality were reduced for those in receipt of the telehealth and telecareinterventions. The evaluation was the largest investigation into telehealth andtelecare in the world, involving over 6000 participants. The target groupsin the study were people with long-term conditions such as diabetes andincluded people with dementia and their family carers.

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Options Presented by Smart Phones

Smart phones are changing health care delivery for both patients andproviders, although their application to dementia caregiving has not hap-pened yet on any wide-spread scale. Sarasohn-Kahn (2010) in her reportprepared for the California HealthCare Foundation provided examples ofsome of the “apps” that have been developed for patients including appli-cations that allow access to medical records; “reminders” for medicationadherence and compliance; mobile and home monitoring of such biomet-rics as blood pressure and heart rate; as well as applications designed topromote wellness and/or fitness. It is likely that more and more of thesehealth-related applications will be developed in the future. Since they use atelephone for communication of information (and a laptop or desktop com-puter is not needed), they may be more appealing to stressed caregivers whomay not have the time or the background to use more complex computersystems. An interdisciplinary field called Gerontechnology has emerged inrecent years that combine the programming efforts of gerontologists andproduct engineers, resulting in a new generation of programmable smartphones aimed at addressing common health problems in older adults suchas falling, wandering, depression, visual impairment, and memory failure.Some of the apps can detect an emergency (i.e., patient wanders outsideof the house) and automatically call for help (Fozard, Rietsema, Bouma, &Graafmans, 2000). These devices are not widely marketed at present but arelikely to be more readily available in the future. If production and acquisi-tion costs are kept low, this could be a very attractive treatment option forlow and middle-income countries around the world.

Internet-Based Service Delivery Programs

Colantonio and colleagues (2001) stated that relatively younger caregiversare those most interested in receiving support via the Internet, althougholder adults are becoming more “computer savvy” and we can expectthat trend to grow as the “baby boomers” continue to move into oldage. A number of Internet-based psycho-educational intervention programswere developed with the intention of providing dementia caregivers theknowledge and skills to be more successful in the caregiving role theyhave assumed (Bass, Mcclendon, Brennan, & Mccarthy, 1998; Beauchamp,Irvine, Seeley, & Johnson, 2005; Hepburn, Lewis, Sherman, & Tornatore,2003; Hepburn et al., 2007; Lewis, Hobday, & Hepburn, 2010). Of noteis that most of them were undertaken in North America. Some commoncharacteristics of these programs include: (1) an online discussion forum(some are un-moderated) or message board; (2) information on nationaland local resources; (3) real-time or archived education classes via tele-phone or videos; (4) psycho-educational information; (5) telephone support

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or consultation system with various degree of automation; (6) and that theprogram is usually complemented with a manual for both the caregiver andthe trainer (Powell, Chiu, & Eysenbach, 2008). It is interesting to note thatmany of these programs were transformed out of an existing didactic work-shop that caregivers attended inperson. However, the ability to provide thesame kind of program over the Internet increases its “reach” and allows busyand stressed caregivers the option to participate when they have both theneed and the time to do so.

An example of the latter is the program called iCare that is currentlybeing evaluated in the United States. This research-based intervention isfunded by the National Institute on Aging; it is an Internet-based programthat offers a workbook, DVD, and online materials to teach skills to helpdementia caregivers cope with caregiving with less distress. It was developedbased on an evidence-based program that has been replicated independentlyand proven effective with a wide variety of dementia family caregivers (Belleet al., 2006; Gallagher-Thompson et al., 2003; Gallagher-Thompson et al.,2007; Gallagher-Thompson, Wang, et al., 2010), and it uses video clips thatcaregivers can learn from in a more dynamic manner. The video clips por-tray “less effective” compared with “more effective” ways of coping witheveryday stressful situations experienced by dementia caregivers. Data anal-yses are currently ongoing; if it is determined that this program is moresuccessful at improving caregivers’ quality of life (compared with a controlcondition), it will be one of the most comprehensive online programs avail-able at the present time (B. Kajiyama, personal communication [iCore projectand review of existing technologies for dementia caregivers], 2012).

Online Support Groups

The rapid expansion of social media and networks like Facebook, Twitter,and Google+ or more recently established patient communities likePatientsLikeMe, QuitNet, and CureTogether are also fertile ground for appli-cation to dementia family caregivers—although they do not seem to beused much by this target group at present. Online communities featurethe ability to self-organize, coalesce, and disperse with relative anonymity.Since 2005, an Informal Interest Group “Aging in Asia” was formed in theGerontological Society of America for academics from all Asian countries todisseminate information and collaborate. A Facebook page has also beencreated for this group. These platforms can be useful for low-cost recruit-ment of caregivers into research studies, as well as for online support. Onlinesocial networks represent a development of the new concept of health,based on self-empowerment, which broadens the initial focus on illness toinclude the improvement or resolution of chronic diseases, the preventionof unhealthy states, and the promotion of wellness (Swan, 2009). In thiscontext it has been suggested that individuals will become action-taking in anumber of areas such as measuring, tracking, experimenting and engaging in

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interventions, treatments and research, doing so in collaboration with healthpeers and in co-care with physicians and other health professionals.

Assistive Technologies

Assistive technologies have been identified as another tool that can be usedto improve independent living, improve the safety and autonomy of peoplewith dementia, and support the quality of life (a “peace of mind”) for themand their family caregivers (Magnusson et al., 2004; Topo, 2009). Examplesof these include alarm sensors to prevent demented individuals from wan-dering away; sensors to turn off gas or stove; and pill dispensers that tweet,text, or email caregivers if pills are not taken at the appropriate time and/orday, etc. The list will only become longer as technologies advance. Thesehold great promise for reducing caregiver burden.

DVD Products

There are several research studies where DVDs or videotapes were usedto provide information, support, and skill training to dementia familycaregivers. One preliminary study by Gallagher-Thompson et al. (2010) isnoteworthy in that the DVD was developed in Mandarin Chinese and eval-uated with Chinese American caregivers. Results show that caregivers whoreceived the combination of workbook and the DVD that taught a varietyof cognitive and behavioral skills for dealing with the stress of caregivingreported that the difficult behaviors that their family member exhibitedwere less stressful and bothersome after completing the program, comparedto before their participation, and compared to a control group that wasgiven an information-only DVD. This product has been widely distributed inMandarin-speaking regions of China. Modifications of this approach are cur-rently underway in Australia/New Zealand and the United Kingdom, whichalso are interested in developing internet-based versions of the skill-trainingapproach.

In addition to those created as part of a research study like the onepreviously mentioned, there are DVDs either commercially produced, thoseproduced by a government entity or by a nonprofit organization that canbe ordered online aimed for both professional caregivers at long-term carefacilities or for the average home consumers. Product price ranges fromUS$25 to US$100. They usually are accompanied by a manual, but mostof them are untested as to whether they are evidence-based or showneffective in producing positive outcomes (B. Kajiyama, personal commu-nication, 2012). A web search reveals that there are many videos/DVDsrelated to dementia caregiving that have been developed and are availablefor purchase or loan. Several of the well-received videos were produced bythe National Institute on Aging, the Alzheimer’s Association, and those byindependent commercial production companies such as Terra Nova Films

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and LifeView Resources, Inc. Similar products were also found in otherplaces in the world including Canada, Hong Kong, India, Taiwan, andthe United Kingdom.

However, Powell and colleagues (2008), in their systematic review oftechnologies supporting family caregivers, concluded that although thereare many positive findings, on balance, this literature should be interpretedcautiously. Effects were found to vary considerably among caregivers withdifferent characteristics (e.g., initial level of burden); they concluded thatsolid information about the role, effectiveness, and efficacy of technology inassisting dementia caregivers is still in its infancy. More research (both quan-titative and qualitative) and program evaluation needs to be done beforefirm conclusions can be drawn about the real effectiveness of the use oftechnology (Topo, 2009). Nevertheless, technologies hold great promise foraddressing needs of economically and socially diverse caregivers around theworld, for example, caregivers living in rural areas, in lower income coun-tries, or caregivers from ethnic minority populations (Lewis et al., 2010).There is a widely accepted belief that technology will help meet their needs,and more importantly, these easily accessible formats enable caregivers toaccess much needed information without being limited by geographic andtime constraints (Chiu et al., 2009; Lewis et al., 2010; Magnusson, Hanson, &Nolan, 2005). The flexibility and spontaneity that these technologies offerappear to be of considerable value to many. One review article published bya group of scholars in France showed that the Internet, as a means to deliveran intervention program, is more attractive, interactive, and less intrusivethan the telephone (Wu, Faucounau, De Rotrou, Riguet, & Rigaud, 2009).Surveys carried out in the United States show that caregivers under the ageof 50 are more likely than those over 50 to access technology. In contrast,racial and ethnic minorities ages 50 and older are more likely than nonmi-nority caregivers of the same age to rate technology as helpful, while amongyounger caregivers no difference was noted by race, suggesting that olderethnically diverse caregivers in particular may be an untapped, but grow-ing market, likely to be responsive to technologically-based interventions.More research is clearly needed on this topic to strengthen current existingevidence-base.

OTHER “PROMISING” PROGRAMS FOR DEMENTIA CAREGIVERS

Other programs that have been evaluated and for which some data exist sug-gesting that they have positive effects include: traditional support groups;informational programs (alone—for example, educational materials beingmade available in the primary care physicians’ office); case management;collaborative and integrated care models; worksite-based and home-basedinternet programs; telephone-linked care interventions; befriending and

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one-to-one peer support, and use of organized resources such as day careand respite care (designed to give the caregiver a “break” while the PWDis in a safe environment). However, for all of these, few (if any) random-ized trials exist that meet strict criteria for these programs to be classified as“evidence based.” Nevertheless they may play an important and helpful partin mitigating distress in some caregivers—particularly when they are initi-ated after careful evaluation of the caregivers’ needs, resources, and abilityto access existing services—as recommended by Woods (2010), with carefulattention to how service needs vary across the continuum of decline seen inthe dementias (Coon, Keaveny, Valverde, Dadvar, & Gallagher-Thompson,2012), and also variation in caregiver preferences. For example, the subsetof caregivers who join psycho-educational or support group programs mayhave little overlap with those for whom social isolation has been a lifestylechoice rather than an unwelcome consequence of caring. This has beenillustrated by an analysis of the social networks of participants in Befriendingand Costs of Caring (BECCA), a randomized controlled trial (Charlesworthet al., 2008) in which family carers in the intervention arm were put incontact with a befriending scheme and offered a match with a trained laybefriender. Uptake of one-to-one befriending for carers was disproportion-ately higher for those carers in restricted social networks who had little or nocontact with family, friends, or neighbors (Charlesworth, Tzimoula, Higgs, &Poland, 2007) compared to socially integrated carers who received inputfrom both family and support services.

DISCUSSION

Are Evidence-Based Programs Effective?

In 2010 Olazaran and colleagues from the United Kingdom, Spain,Hong Kong, Australia, Canada, and United States reviewed 176 random-ized controlled trials in which such interventions were studied. While manywere conducted only with persons with dementia (focusing, for example, oncognitive training), a proportion focused on family caregivers. These stud-ies covered a wide range of intervention programs including, for example,caregiver education, coping skills training, support groups, and multi-component studies. They conclude that “[nonpharmacological treatments]emerge as a useful, versatile, and potentially cost-effective approach toimprove outcomes and quality of life in Alzheimer’s disease and relateddisorders for both the person with dementia and caregiver” (p. 162). Theyfurther suggest that nonpharmacological treatments of demonstrated effec-tiveness might be made available cheaply in developing countries sincethey are typically of low cost (the cost mostly related to the human effortinvolved)—not as costly as technology or medication, both of which canbe prohibitively expensive for lower income countries. A subsequent brief

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report that appeared in Alzheimer’s Disease International summarized thekey findings and recommended focusing on areas where a small changecould bring about significant improvement in the quality of life of either thecaregiver or the person with dementia (Woods, 2010).

Earlier reviews are also supportive of the positive impact of various non-pharmacological approaches to reduce caregiver burden and distress. Forexample, in 1993, Knight, Lutzky, and Macofsky published a meta-analysisof existing studies of this type, but they found only small to moderateeffect sizes, generally, which they attributed to differences in methodologiesand outcome measures. In 2002, Sorensen, Pinquart, Habil, and Dubersteinconducted an updated meta-analysis of existing studies and found moder-ate effect sizes for increasing caregivers’ knowledge and decreasing theirburden and depression. They concluded that psychoeducational and psy-chotherapeutic interventions showed the most consistent short-term effectson a variety of outcome measures. In another meta-analysis, Brodaty, Green,and Koschera (2003) reported significant benefits on caregiver psychologi-cal distress, caregiver knowledge and on other main caregiver outcomes,except for caregiver burden, and on patient mood. Elements of successfulinterventions were involvement of patients in addition to caregivers in thestructured program. Qualitatively, other important elements were practicalsupport for the caregivers, involvement of the extended family, structuredindividual counseling, and a flexible provision of a consistent professional toprovide long-term support. Four of seven studies that they reviewed demon-strated delayed nursing home admission. They concluded that programsthat involve patients and their families and are more intensive and modi-fied to meet individual caregivers’ needs seem to be the most successful.In 2006, Pinquart and Sorensen reviewed 127 intervention studies publishedbetween 1982 and 2005 and concluded that, on average, significant butrelatively modest effects were found on burden, depression, subjective well-being, and knowledge, overall, with only multi-component interventionshaving reduced the risk for nursing home placement. Again, they con-cluded that psychoeducational interventions that require active participationof caregivers had the broadest effects.

Gallagher-Thompson and Coon (2007) reviewed over 300 studies in aneffort to delineate which met criteria to be classified as “evidence-based”according to strict guidelines of the American Psychological Association.Criteria included: having at least two conditions to which participants arerandomly assigned; having at least a medium effect size when conditionswere compared on key outcomes; and being replicated in at least one settingother than the one in which the program was first developed. They foundthat only 19 studies met these criteria: most reported on psychoeducationalprograms; these were followed by psychotherapy studies, and then multi-component studies (of which only two were published at the time thatreview was done). A more comprehensive and updated version can be

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found in Coon et al.’s (2012) chapter in a book on evidence-based inter-ventions to meet the mental health needs of older adults and their families.

Selwood and colleagues (2007) reviewed studies conducted in theUnited Kingdom and the United States, using the Oxford Centre forEvidence-Based Medicine to evaluate 244 studies, of which 62 wereincluded, but only 10 of which met their “level one” (strict) criteria (Selwood,Johnston, Katona, Lyketsos, & Livingston, 2007). They concluded that there isexcellent evidence for the efficacy of 6 or more sessions of individual behav-ior management therapy centered on teaching caregivers skills to managetroublesome behaviors of the care recipient. This kind of training alleviateddistress in caregivers both immediately and for up to 32 months in follow up.

Other reviews authored primarily by US, UK, and Australian researchers(e.g., Brodaty et al., 2003; Etters et al., 2008; Selwood et al., 2007), withthe exception of one recent review from Spain by Carretero et al. (2009),generally support the conclusions noted above—namely, that a wide rangeof nonpharmacological treatments are (to a greater or lesser extent) effectivein improving caregiver outcomes including quality of life (variously definedin different studies).

Finally, Thompson and colleagues (2007) reviewed information andsupporttype interventions for dementia caregivers (a total of 44 studies,primarily from the United States and United Kingdom) and draw theconclusion that there is no universally effective intervention to improvecaregivers’ quality of life. They therefore advise caution and recommendthat policy makers and service planners require more data that addressvery basic questions such as “For whom is this service likely to be mostbeneficial?” and “At what stage in the caregiving process should this servicebe introduced for maximal effectiveness?” These are excellent points to bekept in mind going forward into the future.

A related question of interest is: Do these “evidence-based” inter-ventions work as effectively with caregivers from diverse ethnic, racial,cultural, and linguistic backgrounds, as well as with caregivers from lessstudied countries, as they do with White/Caucasian/Anglo caregivers fromhigh-income countries for whom many were developed initially?

The paucity of research that specifically addresses these issues isnotable. Some research conducted in the United States may shed lighton some diversity issues, although the current state of our knowledge isfar from definitive. For example, Pinquart and Sorensen (2006) reportedsignificant differences between White non-Hispanic caregivers and bothHispanic/Latino and Asian caregivers on level of depression (both minor-ity groups were more depressed across several studies than their Whitepeers) and on some sociodemographic variables that are likely to affect par-ticipation in interventions, such as age and related characteristics (minoritycaregivers were younger, employed, and often taking care of children orteenagers in addition to demented parents) and presence of strong filial

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obligation beliefs that could discourage help-seeking behavior outside thefamily. In the same article, baseline data (obtained prior to participation ina highly structured intervention program) from the large-scale, multi-site,multi-ethnic REACH II study was subject to secondary analyses to furtherstudy this issue. As stated earlier, African Americans were included in thissample, as well as Hispanic/Latino and Caucasian caregivers. Significantdifferences in resources and stressors were found among the groups, sug-gesting that effective interventions may vary considerably, based on ethnicand cultural characteristics. It is notable that no Asian caregivers wereincluded in REACH—in fact, Asians as a whole (both Asian Americans andAsian populations from other parts of the world) have been significantlyunder-represented in dementia caregiving research. This is an area in needof much additional research in the future; only limited information exists atpresent to address issues of which interventions are likely to be effective(and how do they need to be modified) to address cultural, linguistic, andsocioeconomic diversity.

Cost-Effectiveness of Interventions to Support Family Caregivers

A recent systematic review of cost-effectiveness of interventions to supportfamily caregivers of people with dementia identified only 12 interventionstudies that measured both costs and outcomes for community dwelling fam-ily caregivers (Jones, Tudor Edwards, & Hounsome, 2012). The 12 includedstudies represented work from the United Kingdom, United States, Canada,Australia, France, the Netherlands, and Finland. Four were evaluations ofpharmacological interventions, four evaluated a change in the managementor delivery of existing services and four looked at psychosocial interventionsfor caregivers (namely, befriending, in-home/telephone tailored occupa-tional therapy, a cognitive-behavioral family intervention and one-to-oneproblem solving). The overall quality of the economic evaluations wasgood, with two of the four psychosocial studies achieving all 10 criteria onDrummond and colleagues’ checklist for economic evaluations in health care(Drummond, Sculpher, Torrance, O’Brien, & Stoddart, 2005). Only the occu-pational therapy intervention (Graff et al., 2008) demonstrated a decrease incosts associated with significant benefits for the primary outcome.

What Makes Evidence-Based Programs Successful?

This is a complex question with no simple or straightforward answer,though generally, researchers and service providers do agree on severalkey elements associated with success.

First, a comprehensive assessment should be done (to evaluate needsand resources) before any services are recommended, and its results usedto guide selection of intervention. There are many recommendations for

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what this assessment should consist of, ranging from reliance on one ortwo questionnaires (e.g., the American Medical Association’s CaregiverSelf-Assessment Questionnaire, available for free download at http://www.ama-assn.org/ama/pub/physician-resources/public-health/promoting-healthy-lifestyles/geriatric-health/caregiver-health/caregiver-self-assessment.page), or the Camberwell Assessment of Needs in Elderly (CANE) fromthe United Kingdom (Reynolds et al., 2000), or a measure of depressivesymptoms such as the widely used Center for Epidemiologic StudiesDepression Scale (CES-D; http://www.ncdhhs.gov/mhddsas/providers/DWI/dualdiagnosis/CES-D_Scale.pdf), or a Risk Appraisal Measure suchas was developed by the REACH II project (Czaja et al., 2009), to the useof much more elaborate assessment protocols (e.g., as recommended in amonograph by Family Caregiver Alliance at http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1699). In addition, the interested reader isreferred to several recently published review papers on measures forresearch in dementia caregiving (Brodaty, 2007; Moniz-Cook et al., 2008;Van Durme, 2012).

Second, staff who conducts the assessments need to be familiar withevidence-based programs and services and available resources in theirparticular region, as well as eligibility criteria and cost (if any), so thatappropriate referrals can be made. Novel programs that are research basedshould also be considered. Assistance in this regard can come from the var-ious Alzheimer’s Association branches around the world, which generallymaintain up-to-date information on local resources and from consulting theAdministration on Aging and Rosalynn Carter Institute on Aging websites(given earlier in this article) for evidence-based programs developed in theUnited States. There may be other similar organizations in a given region thatwould be repositories of information as well, that could be consulted. Or ifthe program is able to offer its own interventions, then clearly what theycan offer each caregiver will be limited by what services their organizationis equipped to provide.

Third, trained staff needs to be present to deliver the interventions. Theyare likely to be found in community settings that are part of disseminationresearch programs, which include staff training as crucial to the program’ssuccess.

Fourth, success of the intervention always needs to be measured, andpreferably at frequent intervals, so that adjustments can be made if noprogress is seen. Interventions should be theory-based: (e.g., the Stressand Coping model; Pearlin, Mullan, Semple, & Skaff, 1990), the PleasantEvents and Activity Restriction (PEAR) model (Mausbach et al., 2011), orthe cognitive model (Losada, Montorio, Knight, Márquez-González, & Izal,2006). This will help establish the mechanism of action of the expectedimprovements, and which outcomes will be modified through the interven-tion. At present, only a handful of studies have focused on mechanisms

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of change such as self-efficacy (Coon et al., 2003), social support (Roth,Mittelman, Clay, Madan, & Haley, 2005) or dysfunctional thoughts aboutcaregiving and leisure (Losada et al., 2011). Outcome measures should betheoretically related to the content of the intervention, so that positive impactis likely to occur on the outcomes selected, and that only caregivers whoreport high scores in symptoms in the targeted outcome measure should beincluded in the interventions (Zarit & Femia, 2008).

Finally, virtually all in the field agree that intervention packages need toallow flexibility in how they are implemented, so that they can better meetthe specific and distinct needs of individual caregivers.

An Overview of “Best Practices” in Other Parts of the World

There is limited research evaluating (or even describing) “best practices” inother parts of the world. Some examples of extant work include a reviewchapter describing some existing services and infrastructure changes thatare currently being planned to support dementia patients and their familycaregivers in Taiwan, Hong Kong and China (Gallagher-Thompson, Tzuang,et al., 2010) In these Chinese societies, although children and family are stillthought to be the most reliable sources of caregiving for a family memberwith dementia, more public resources are needed as the traditional beliefof filial piety is increasingly eroded. Very few caregiver support servicescurrently exist in China and India, whereas in Taiwan, Hong Kong, andKorea there are more established networks of services and providers atthis time in the form of respite, support groups, home care and day careservices, etc. Recognizing the growing number of dementia patients andresulting burden on family and society, Korea has taken more proactiveapproach to dementia than other Asian countries in terms of establishinga strong infrastructure. For example, in 2006, the city of Seoul foundedthe “Seoul Metropolitan Center for Dementia” with a “Dementia SupportCenter” in each of its 25 districts. Currently, anyone living in the city canreceive services from the district “Dementia Support Center” (e.g. dementiascreening) (City of Seoul, n.d.). At the national level, the Korean governmentdeclared the “War on Dementia” in 2008 and dementia is now health carepriority. This new national policy on dementia management was put intoeffect in early February, 2012. It includes establishing “Dementia Centers”in the existing public health clinics in cities, counties and districts acrossthe nation for dementia patients’ registry, early diagnosis, prevention andeducation program, and assistance for patients and family caregivers (KoreaDementia Management Act, 2011). The focus, however, is more on medical/clinical aspects of dementia, while programs to support dementia familycaregivers are relatively sparse at present.

Unfortunately, to our knowledge, few empirical studies have been con-ducted in the Asia Pacific region, as well as in regions that were part of

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the former Soviet Union, and most parts of the continent of Africa. Butwe do want to point out some samples of successful program that wewere able to locate from around the world. Dias et al. (2008) reportedon the effectiveness of a home care program for dementia caregivers inGoa, India; researchers from the 10/66 dementia research group conducteda randomized controlled trial of an intervention to support caregivers inRussia (Gavrilova et al., 2009); and lastly, a home-based caregiver trainingprogram which focused on enhancing caregiver’s competence to managebehavior problems was found to significantly decrease these problems andimprove caregivers’ self-efficacy, in a controlled trial in Taiwan (Huang et al.,2003). Caregiving interventions are also receiving more attention in Spain.In 2006, the Law for the Promotion of Personal Autonomy and the Support ofDependent Persons was approved. This law acknowledges the importanceof caring for the caregiver. Even though this law’s passage has increasedawareness of Spanish society regarding the needs of persons with dementiaand their family caregivers, the expectations raised by its passage are not yetbeing met. Although several studies of interventions (mostly of a cognitive-behavioral nature) have been carried out in Spain (Etxeberria et al., 2011;López, Crespo, & Zarit, 2007; Losada et al., 2011; Losada Baltar et al., 2004;M. Márquez-González, Losada, Izal, Pérez-Rojo, & Montorio, 2007), withavailable treatment manuals—(e.g., for the Losada et al. (2011) intervention,almost all the support provided by governmental agencies has been of aneconomic nature, with significant differences between regions (Mateos et al.,2010). Clearly more extensive research is needed in that country as well.

Note that there may well be other intervention research programs thatwe were not able to access due to our requirement that publications be inEnglish; future reviews may very well address that gap.

Why Are Best Practice Models Not Being Used as Extensivelyas They Could Be Used Around the World?

A key factor is lack of knowledge that best practice models even exist.Although there are hundreds of published papers describing such programsfrom many countries around the world, most practitioners do not read thescholarly literature, and until very recently few community-based dissemina-tion projects have been funded to test evidence-based interventions in “realworld” settings. In addition, although general practitioners play an importantrole in early detection of dementia, as noted above, they generally lack sig-nificant knowledge and skills needed in this field. Several recommendationshave been made in order to increase general practitioners knowledge of,and adherence to, dementia guidelines (Perry et al., 2011).

Because of this lack of knowledge, psychosocial interventions are rarelyrecommended by physicians. Programs to increase physicians’ knowledge

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about existing strong evidence based programs would greatly increase thelikelihood that they will be used—either alone or alongside other treatmentsfor both patients and caregivers (Vasse et al., 2012). For example, in India,raising awareness of the progression of dementia is sorely needed as physi-cians lack knowledge about how to assess and treat dementia patients at thevarious stages of the disease. Caregivers also have limited awareness andunderstanding of this disease. Gupta (2012) suggests that psychoeducationabout dementia and its effects be provided to both health care providers andfamily members.

Another factor is lack of adequate infrastructure to fund and mountthe best practice models that do exist. Unfortunately dementia-related pro-grams do not appear to be a priority at this time for some countries thatfocus more of their budget and government assistance on what are per-ceive as larger public health problems (e.g., HIV/AIDS in Africa; alcoholismin the former Soviet Union republics; poverty and hunger in India andrural parts of China). There are plans to address the increasing needs ofdementia patients and their families in the various regions of China andTaiwan by building infrastructure and developing the manpower needed(Gallagher-Thompson, Tzuang, et al., 2010), but at present there are fewformalized structures for implementation. In Taiwan, for example, around80% of persons with dementia are taken care of by family members—notby government-sponsored service providers (Taiwan Alzheimer’s DiseaseAssociation, 2012). Yet the Taiwanese government started a national Ten-Year Long Term Care Plan in 2008. Since then in-home help, home nursingservices, meals on wheels, community-based rehabilitation, and respite careare becoming available to families of PWD and physical disability. Day careservices also have been developed in certain regions but are not prevalentover the island, and nursing homes specifically for persons with dementiaalso exist, but there are not many yet. India also is in much need of moreadult day care centers to support dementia patients and their caregivers.A problem prevalent in small towns across India is that physicians andhospitals have inadequate patient record management systems, so regularfollow-up check-ups are rare for dementia patients (Gupta, 2012). As wehave noted, in countries such as Spain there are specific laws about theamount of help that should be provided for dependent people and theircaregivers—although these laws do not yet formally recognize the value ofempirically supported programs (Zabalegui et al., 2008).

There is often a very definite lack of clear public policy (and an asso-ciated funding stream) to specifically address needs of dementia patientsand their caregivers. In India for instance, universal health care coveragehas yet to provide adequate support for the specialized care needs ofdementia patients. One suggestion is that the Indian government allocatefunding to subsidize hospital and medication costs especially for single andwidowed women providing care for an older adult with dementia (Gupta,2012). As noted earlier, Korea has implemented a comprehensive national

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policy to build infrastructure for dementia management but its focus is moreon medical/clinical aspects of dementia and dementia patients. Relativelyless is included about social aspects including interventions for dementiafamily caregivers. Incorporating a plan to utilize the “best practices” forcaregivers into the existing policy can further strengthen the policy by morefully addressing Korean government’s intention of controlling and managingdementia before the illness gets out of control at societal level. An increas-ing number of countries have developed national dementia plans (e.g.,France, Australia, United States, Canada; see www.alz.co.uk for full list).Alzheimer’s Disease International has been successfully advocating with theUnited Nations to include dementia as a noncommunicable disease, leadingup to a forthcoming World Health Organization policy on this matter.

We have to consider the impact of varying “cultural contexts”—thenecessity to support family caregivers with “best practices” may not beregarded as a priority for the general public or among caregivers. For exam-ple, caregiving is typically perceived as filial/family responsibility in theAsian cultural context. Thus, caregivers can perceive their role and resultingburden/stress as “normal” and seek treatment for their loved one rather thanfor themselves. Results from National Caregiver Study–Korea are an exampleof this phenomenon: When asked about perceived needs for new services,Korean caregivers expressed more service needs related to patients (e.g.,early diagnosis) and the illness (e.g., education about medical informationand prevention). Services for themselves as caregivers (e.g., caregiving plan-ning and training) was the least expressed need (Korea Ministry of Health &Welfare, 2008).

Implications of Current State of Knowledge for FutureResearch and Practice

Woods (2010) and others, e.g., Olazaran et al. (2010), have several specificrecommendations for policy makers to enable the creation of health carepolicies to ensure that these effective (and promising) models of care areput into practice.

● First, they advocate dissemination of existing nonpharmacological treat-ments of demonstrated effectiveness. This will make significant contri-bution to improving caregivers’ well-being. Effective services need to beexpanded so that more caregiving needs can be met, e.g., skill trainingprograms for stress management; in home support (with bathing, cooking,dressing, behavior problem management, etc.), and others such as individ-ual or group psychotherapy for highly distressed caregivers (if appropriateafter careful screening); overnight and day respite programs, and otherservices and programs that are culturally appropriate and are likely to beaccessed, once they are established. Related to this is the need to do more

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translational research that would demonstrate that treatments found to beeffective in research settings are equally effective in real-life practice.

● Second, actively promoting awareness of services is also important.Providing health education and counseling regarding dementia will helpreduce stigma and improve knowledge of the disease as well as avail-able services (Gitlin et al., 2008; Pinquart & Sorensen, 2006). In addition,creating awareness at the general societal level (via media such as radio,television and social network sites) will bring about ways to improve thequality of life for dementia patients and their caregivers.

● Third, governments and philanthropic organizations, especially in coun-tries with strong cultural traditions of family care (Vasse et al., 2012)need to make significant investments in development and dissemina-tion of new nonpharmacological treatments and should support researchefforts to improve evidence for their effectiveness. Research needs to spanbasic science, medical, clinical, epidemiological as well as psychological,social and environmental interventions and must include interventions forcaregivers. Although an outlay of funding would be required at the “frontend” (for infrastructure costs, program development, and the research toshow effectiveness) the pay-off in terms of reduced reliance on institu-tional placement, improved worker efficiency, and potentially lower healthcare costs for the families of persons with dementia, can more than off-set the initial cost (Brodaty & Peters, 1991). In addition, it is essential toaddress the shortage of human resource capacity for the care of those withdementia and their caregivers (Shaji et al., 2010).

● Fourth, barriers that prevent services from being accessible (often to largesegments of a population) must be identified and reduced. Excellent pro-grams may exist but may be accessible only to a small percentage ofthe population, due to such issues as cost, language abilities, and loweducation/health literacy/awareness of what these programs can do forthe caregiver and how families can benefit. A related issue is the factthat stigma still exists regarding the diagnosis and treatment of dementia.Au et al. (in press) observed that caregivers experienced misunderstandingfrom others about dementia and discrimination throughout their caregivingcareer. The majority of caregivers thought that there was a lack of knowl-edge about dementia among the general public. Therefore, along withother stigmatizing illnesses, public education about dementia should bea government priority. Furthermore, better access to services by enhanc-ing levels of integration between specialized services and primary carerequires careful consideration.

In closing, the authors hope that this international review ofnonpharmacological interventions for family caregivers will help inform andsecure better outcomes for people with dementia and their families aroundthe globe.

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Documents

International Perspectives on Nonpharmacological Best Practices for Dementia Family Caregivers: A Review