© Springer International Publishing Switzerland 2015Ingrid Söderback (ed.)International Handbook of Occupational Therapy Interventions10.1007/978-3-319-08141-0_28
28. Teaching and Supporting Clients with Dementia and Their Caregivers in Daily Functioning
Department of Rehabilitation 898, Scientific Institute for Quality of Healthcare, UMC St Radboud, P.O. Box 9101 6500HB Nijmegen, The Netherlands
Maud J. L. Graff
Community-based occupational therapy for clients with dementia and their caregivers is a client-centered and family-centered intervention that enables clients with dementia to participate in meaningful activities of daily living (ADL) in their own environment. It enables caregivers to support these clients in these ADL activities and reduces the caregiver’s burden. Occupational therapists (OTs) achieve this outcome, first, by analyzing the life stories and the needs and motivations for meaningful daily activities of these clients and their caregivers in the past and present, second, by setting feasible goals together, third, by enabling clients with dementia to do meaningful activities in ways that will enhance their ability to participate by using strategies to compensate for their cognitive decline, and fourth, by modifying the client’s environment to better support participation. Caregivers are trained in supervision and problem solving, in using cognitive and behavioral strategies to change their coping behavior, and reduce their burden of care.
KeywordsBehavioral interventionsCaregiver burdenCopingDementiaCommunity basedEnvironmental adaptationsHome modifications
Look, he is happy doing the gardening by himself with these adaptations. Now, I don’ t feel helpless anymore and I have time to do my own activities.
A caregiver wife
Dementia is a chronic and degenerative disease that causes disorders of memory, behavioral problems, and loss of initiative, of independent functioning in daily activities, and of participation in social activities. These problems (1) decrease the well-being of people with dementia and their caregivers (Graff et al. 2007), (2) put pressure on the family and friends’ relationships (Coen 1998; Graff et al. 2006a, b; Jepson et al. 1999), and (3) cause high healthcare costs. Several studies have proven that multicomponent interventions, which are individualized, tailor-made, and focused on patients and caregiver needs and on feasible goals , are most effective in dementia (Brodaty et al. 2003; Droës et al. 2011a; van Mierlo et al. 2012; Olazaran et al. 2010; Smits et al. 2007; Spijker et al. 2008). Therefore, there is a need for individualized multicomponent programs that are focused on activating and training people with dementia in meaningful daily activities to prevent loss of initiative, independence, and social exclusion.
Community-based occupational therapy for clients with dementia and their caregivers is such a multicomponent, individualized, and tailor-made client-and-caregiver-centered intervention. The intervention enables clients to participate in meaningful activities of daily living (ADL) in their present environment, and helps caregivers to support these clients with dementia in these activities and reduce their caregiver burden. These definitions follow the World Federation of Occupational Therapists (WFOT 2004), the Canadian Association of Occupational Therapists (CAOT 2008), the consensus of guidelines of this community-based occupational therapy program (Graff et al. 1998, 2000, 2003, 2006b; van Melick et al. 1998, 2000), and the Dutch Foundation of Occupational Therapy (Kuijper et al. 2006).
Development of the Intervention
This client–caregiver-centered intervention (van Melick et al. 1998, 2000; Graff et al. 2010) was developed during 1996–1998 by a workgroup of occupational therapy experts in a consensus process (Graff et al. 1998, 2000). Its feasibility was tested (Graff et al. 1998, 2000), and the contents and process of community occupational therapy were identified through a qualitative case study analysis (Graff et al. 2006b). Accordingly, in 2008–2010, this community occupational therapy intervention for older people with dementia and their caregivers was described as a program, consisting of the theoretical and evidence-based background (part 1); the intervention guideline in which the step-by-step intervention is explained and illustrated with descriptions of practical cases (part 2); observational assessments, questionnaires and interview assessments, and guides (part 3); and a DVD with practical case examples (Graff et al. 2010). This book was also published in French (Graff et al. 2013), Italian (Graff et al. manual 2013; book in press), and English languages. Last year, this translated manual was piloted and adapted to the UK situation (Wenborn and Graff et al. manual 2014).
Purpose, Rationale, and Objectives
The intervention is directed to clients with dementia and their caregivers. The focuses are on conducting optimal adaptation of the limitations caused by the dementia clients’ cognitive decline. The aims are improvement of problem solving and coping behavior, and maintenance of skills that enable clients to participate in meaningful everyday activities. The aims for the caregivers are to give them support, and to facilitate their burden so that they, in turn, encourage the clients’ participation in meaningful ADL. The intervention goals are based on the needs, interests, beliefs, habits, and roles of both clients and caregivers. This intervention approach is based on the model of human occupation (MOHO; Kielhofner 2008) and narrative methods (Hasselkus 1990; Riopel-Smith and Kielhofner 1998, Kielhofner et al. 2004), and also on the advice process and consultation methods. Here, information originating from clients’ and caregivers’ stories, beliefs, needs, interests, habits, roles, norms, and goals are interpreted for use in the goal-setting and intervention processes, and caregivers are coached how to deal with the consequences of dementia in daily life situations.
Candidates for the Intervention
The intervention is directed at all people with mild-to-moderate dementia (Mini-Mental State Examination; MMSE score of 10 to 24; Folstein et al. 1983), who are living in the community, and at their caregivers (partners, family members, neighbors, or friends) who support them at least 1 day a week, or at people living in homes for the elderly and their caregivers.
Epidemiology of Dementia and Caregiving
Dementia is one of the three major diseases that make the largest demands on healthcare (Meerding et al. 1998; Wimo et al. 1998, 2003, 2006), and is a major cause of disability and care burden in the elderly (Jönsson et al. 2006). In 2002, in the Netherlands, nearly 1 % of 65-year-olds suffered from dementia. This percentage rose with increasing age to around 40 % in people aged 90 and over. In 2050, it is predicted that 2.2 % of 65-year-olds will suffer from dementia. Older people with dementia (age > 65 years) are mostly women (80 %). Of the younger people with dementia (age < 65 years), the mean age is 59 years; here 50 % are men and 50 % are women (Dutch Health Council 2002). In 2003, dementia was responsible for 5.3 % of the total healthcare costs, which was 14 % of the age-specific total costs for people aged 75–84 and 22 % for people aged 85 and older (Slobbe et al. 2006). In 2002, 39 % of dementia patients needed continuous care, 38 % needed home care daily, 23 % needed home care occasionally, and 60 % of community-dwelling dementia patients had a need for daily or continuous care.
In 2010, the worldwide number of people with dementia was estimated to be 35.6 million. This number is expected to grow to 135 million by 2050 (Ballard et al. 2011; Alzheimer’s Disease International 2013). A similar trend is expected in the Netherlands, where the number of people with dementia is estimated to grow from 243,000 in 2011 to 565,000 in 2050 (Dutch Alzheimer Association 2011). About 70 % of the people with dementia live at home and are cared for by informal caregivers, who are mostly family members (Dutch Alzheimer Association 2011). Most are the partners (70 %) or daughters (28 %) of people with dementia. About 750,000 people deliver care for more than 8 h/week and for longer than 3 months, and 150,000–200,000 caregivers report a very high burden of care (Dutch Health Council 2006). Therefore, it is important to implement effective and efficient healthcare interventions that increase the independence and well-being of people living with dementia, decrease caregiver burden, and permit a more efficient use of scarce healthcare resources (Smits 2007; Spijker et al. 2008; Olazaron et al. 2010; Droës et al. 2011a; van Mierlo et al. 2012).
The policy for elderly people and ageing pursues a deinstitutionalization of care (Ministry of Housing, Regional Development and the Environment & Ministry of Public Health, Welfare and Sports 2007) which is in line with the desire of elderly people to remain at home for as long as possible, acknowledging that, as the disease progresses, admission to a nursing home is inevitable.
In the Netherlands, there are about 3800 OTs who work both in the community and in institutes (NIVEL 2012). Because most people with dementia live at home, community occupational therapy for people with dementia and their caregivers has become a common intervention in the last decade. In the Netherlands, community occupational therapy intervention is for all people who have occupational therapy-related problems covered by public health insurance.
In the Netherlands, there are 3.73 million caregivers.
Occupational therapy aimed at clients with dementia and their caregivers is an intervention consisting of ten sessions delivered in 5 weeks or more, which is conducted at the client’s home, in a community-based occupational therapy program, but can also be offered in homes for the elderly (Graff et al. 2006b, 2010; Kenens and Hingstman 2003). Referrals to occupational therapy are made from geriatricians, neurologists, psychiatrists, and elderly care specialists of outpatient services, memory clinics, hospitals, nursing homes, homes for the elderly, outpatient mental health services, community health services, and by general practitioners.
The Role of the Occupational Therapist in Applying the Intervention
With this client–caregiver-centered intervention, the caregiver acts as the expert of his own caregiving situation. In such an extensive, interactive, and complicated intervention situations, the OT has different roles for different intervention approaches. The OT has the role of a supervisor and teacher when the cognitive and behavioral approach is conducted on the client and caregiver, and fulfills the role of a coach and a consultant when acting together with the caregivers and the team members.
Both clients and caregivers are actively involved in this process.
The Strengths, Needs, and Case Formulation Phase
This phase is conducted by performing interviews with the dementia client and the caregiver . For analyzing the story of the client with dementia and the caregiver, narrative techniques are used, such as the occupational performance history interview (OPHI; Kielhofner et al. 1998; Riopel-Smith and Kielhofner 1998; Kielhofner et al. 2004) and the ethnographic interview (Hasselkus 1990; Gitlin 1995, 2005). The stories of both the client and the caregiver are analyzed in relation to the needs, interests, beliefs, habits, roles, and motivation for meaningful activities. The process is completed with the clients’ and the caregivers’ expressed desire to choose and prioritize their most important problems in occupational performance . Each one of these interviews is interpreted together with the story of the OT.
The story of the OT is based on the observations of (1) the clients’ skills in performing a meaningful ADL, (2) the caregivers’ coping skills to deal with the client’s problems, and their skills in supporting the clients’ performance, and (3) the social and physical environment. This phase covers four sessions.
The Goal Setting and Intervention Planning Phase
The goals are stated based on the results of all three stories (the story of the client, of the caregiver, and of the OT) of the strengths, needs, and case formulation phase and are set and prioritized in cooperation with both the client and the caregiver in cooperation with the OT during one session.
Phase of Implementing the Intervention Plan
The interventions are tailor-made to each individual client and caregiver’s circumstances and adapted to their personal abilities, and the actual possibility of adapting the social and physical environment. This phase contains five sessions over 5 weeks.
The following strategies, or combinations of them, are used:
The rehabilitation strategy. The clients perform tasks in natural ways, and thus demonstrate their skill levels.
The cognitive and behavioral strategy. During these sessions, caregivers are taught how to cope with the client’s behavior and to solve problems that occur. Moreover, the caregivers are trained to support the client’s meaningful tasks. The aim is to reduce the caregiver’s burden of care and to improve the caregiver’s participation in their own meaningful activities. The caregivers learn about the client’s disease and behavior, technical skills (task simplification and communication skills), problem solving, and home modification skills .
The compensation strategy includes the client’s learning how to use strategies, such as verbally rehearsing sequential steps, which compensate for their cognitive decline. For example, the OT teaches a client with dementia how to perform one of the gardening activities by using appropriate strategies, such as first saying the steps that will be performed during this activity, accordingly looking around for environmental adaptations and instructions, and listening to verbal cues of the caregiver, and making use of these environmental adaptations, cues, and instructions.
The OT conducts environmental adaptations, such as simplifications in the environment with the use of visual or hearing memory aids and written sequential task plans.
The Intervention Eases Impairments, Activity Limitation, and Participation Restrictions
The effect of occupational therapy should be based on its quality, that is, on whether or not a goal is reached. For example, if the client is able to perform only one meaningful activity several times a week, this result may improve the client’s occupational performance and participation in ADL, decrease the caregiver’s burden, and increase the client’s or the caregiver’s quality of life , mood, and well-being (Graff et al. 2006b).
Outcomes of this client–caregiver-centered intervention are diverse, client- and caregiver-driven, and measured in terms of participation in ADL, competence, or satisfaction derived from participation .
This client–caregiver-centered community occupational therapy program was evaluated in a pilot study that assessed its quality and practical usefulness, and which was evaluated as “good” (Graff et al. 1998, 2000). The caregiver role and the client–caregiver-centered intervention were identified by describing the process and contents of the program by a qualitative study based on case study analyses (Graff et al. 2006b).
The research design for the effectiveness study was tested and determined based on a feasibility study (n = 12 clients and caregivers; Graff et al. 2003). Accordingly, the effectiveness of community-based occupational therapy for older people with dementia and their caregivers (n = 135) was evaluated in a randomized controlled trial (RCT). In this RCT in the Netherlands, the intervention was proven effective in improving the participants’ daily functioning (skills and need for assistance), mood and quality of life , and the caregiver’s sense of competence (Graff et al. 2006a, 2007). The results were supported by Gitlin et al. (2001, 2005) and by Steultjens et al. (2004).
Moreover, community-based occupational therapy was found to be cost-effective (Slobbe et al. 2006; Graff et al. 2008) in terms of a significant high proportion of successful treatments and a decrease of costs of healthcare consumption from a societal perspective. Successful treatment was based on a clinically relevant improvement on all three primary outcomes measures: on clients’ skills in daily functioning, on client’s need for assistance, and on the feeling of competence in the caregivers (Graff et al. 2008).
National and Cross-National Implementation
Community occupational therapy for older people with dementia and their caregivers (COTiD) was proven (cost-)effective in improving the daily functioning, feelings of competence, quality of life, mood, and health status of older people with dementia and their caregivers in an RCT in the Netherlands (Graff et al. 2006a, 2007, 2008). However, this was not found in a German pragmatic multicenter trial (Voigt-Radloff et al. 2011a, b). The COTiD intervention was not adapted to the German culture before this intervention was implemented and evaluated on effectiveness. Moreover, OTs had no experience and limited training in the program before the start of the pragmatic RCT in German routine care. Baseline results showed no room for improvement, although the patients’ cognitive status scores on the Mini Mental State Examination (MMSE, Folstein et al. 1983) were comparable. Cultural differences in client–caregiver and professional characteristics as also implementation problems played an important role (Voigt-Radloff 2011a, b). In different implementation studies on psychosocial interventions in dementia, it was found that even when interventions have shown to be effective in research, these benefits evidenced do not necessarily translate when the intervention is implemented in routine care (Berwick 2003; Grol and Wensing 2004; Wensing and Grol 2007). This was also found in an RCT aimed at implementing COTiD in routine care in the Netherlands. Nationwide strategies for implementing COTiD in routine care appeared to be partly effective. This is due to barriers in bridging the gap between research and practice, like quality of professional networks, professional and organizational barriers (Döpp et al. 2011, 2013a, b, Leven et al. 2012). Bridging the gap between different cultures is even more difficult. At this moment, COTiD is translated in four different languages—German (unpublished research version, Voigt-Radloff et al. 2008), English (adapted UK version, Wenborn et al. 2014, in press), French (Graff et al. 2013), Italian (Graff et al. 2014, in press), and Spanish is in progress. It was found that European implementation and research on (cross-)national implementation and evaluation of this COTiD program needs a careful preparative process comparative to the Medical Research Council framework for development and evaluation of complete interventions (Medical Research Council 2010; Campbell et al. 2000, 2007). According to this, it is important to first translate the program and accordingly develop country-specific COTiD programs; second, to get an understanding on access to and quality of care delivery; and, third, on barriers and facilitators for effective implementation, on implementation strategies, and intervening factors before effectively implementing evidence-based psychosocial interventions , like evidence-based occupational therapy interventions, in other countries. In the UK, since 2012, a research project has been started where we follow these steps of the MRC framework to cross-nationally implement this evidence-based COTiD intervention to the UK (Orrell and Wenborn 2011).