566852 research-article2015

JAGXXX10.1177/0733464814566852Journal of Applied GerontologyQuinn et al.

Article

A Review of SelfManagement Interventions for People With Dementia and Mild Cognitive Impairment

Journal of Applied Gerontology 1­–35 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0733464814566852 jag.sagepub.com

Catherine Quinn1, Gill Toms1, Daniel Anderson2, and Linda Clare1

Abstract Self-management offers a way of helping people with dementia or mild cognitive impairment (MCI) to play an active role in managing their condition. Barlow, Wright, Sheasby, Turner, and Hainsworth have defined self-management as the “individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition.” Although commonly used in other chronic health conditions, there has been relatively little exploration of the role of self-management in dementia or MCI. This review aimed to identify group-based psychosocial interventions for people with dementia or MCI that incorporate significant elements of self-management. Fifteen interventions were included in the review: 12 for people with dementia and 3 for participants with MCI. In both the dementia and MCI interventions, the most commonly included self-management components were information, communication, and social support, and skills training. The review findings indicate that components of self-management have been incorporated into Manuscript received: March 31, 2014; final revision received: November 20, 2014; accepted: November 29, 2014. 1Bangor 2The

University, UK Retreat, York, UK

Corresponding Author: Catherine Quinn, School of Psychology, Bangor University, Bangor, Gwynedd, LL572AS, UK. Email: [email protected]

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group-based interventions for people with dementia and MCI. Further studies are needed to address the methodological limitations of the included studies and to determine the effectiveness of self-management interventions with these populations. Keywords Alzheimer’s disease, group intervention, psychosocial intervention, selfefficacy, self-care

Worldwide, it is estimated that the number of people with dementia will rise to 65.7 million by 2030 (Alzheimer’s Disease International, 2009), with the total estimated worldwide cost of dementia reaching US$604 billion (Alzheimer’s Disease International, 2010). With increasing numbers of people being diagnosed with dementia, early diagnosis and intervention in dementia has emerged as a priority in national dementia strategies in highincome countries (Alzheimer’s Disease International, 2011). Thus, there has been a growing need for the development of support programs designed to meet the needs of people in the early stages of dementia (Snyder, Jenkins, & Joosten, 2007). Mild cognitive impairment (MCI) may be a precursor to dementia (Alzheimer’s Disease International, 2011), and therefore, early intervention may help people to adapt to changes in memory and other abilities, potentially stabilizing functioning and hence delaying further progression (e.g., Kinsella et al., 2009). Access to support after diagnosis may help people with dementia and MCI and their family members to better adjust and manage these conditions (e.g., Burgener, Buettner, Beattie, & Rose, 2009). One way in which people with dementia or MCI can play an active role in dealing with their condition is through a self-management approach. Selfmanagement refers to the day-to-day management of a chronic health condition and has been used in several long-term conditions such as asthma and diabetes. Self-management interventions can be beneficial for patients in terms of improving their knowledge of their condition and increasing feelings of self-efficacy (Barlow, Wright, Sheasby, Turner, & Hainsworth, 2002). Coster and Norman (2009) reported that adopting a self-management approach can result in physical and psychological benefits for people with chronic disease. A review by De Silva (2011) concluded that self-management techniques can lead to improvements in quality of life, clinical outcomes, and health service use in people with long-term conditions.

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Although self-management has been used in many different chronic health conditions, there is no universally agreed definition. Barlow et al. (2002) have defined it as the “individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition” (p. 178). Thus, self-management involves a dynamic and continuous process of self-regulation. Selfmanagement programs have been designed to develop “the confidence and motivation of patients to use their own skills and knowledge to take effective control over life with a chronic illness” (Department of Health, 2001, p. 6). Self-management differs from patient education, which is focused on providing disease-specific information, as it incorporates strategies, such as problem-solving skills, which enable patients to change their behavior and manage their condition (Bodenheimer, Lorig, Holman, & Grumbach, 2002). There is no agreed theoretical basis for self-management, and in many studies, the theoretical basis of the self-management intervention is not discussed (Warsi, Wang, LaValley, Avorn, & Solomon, 2004). The most common conceptualization of self-management by Lorig and colleagues is based on self-efficacy or social cognitive theory (Lau-Walker & Thompson, 2009; Lorig & Holman, 2003). Self-efficacy refers to an individual’s belief that he or she can successfully perform a specific action in a particular situation. Studies providing self-management interventions have explored the impact of the intervention on people’s perceived self-efficacy to cope (Holman & Lorig, 1997). Self-management programs can also have other benefits, for instance, people report they benefit through learning from and contributing to other people in similar situations (Holman & Lorig, 1997). This would also be consistent with social cognitive theory, as vicarious learning and experiencing mastery are techniques recommended to improve self-efficacy. There are several other theories of behavior change and adjustment that are potentially relevant to self-management (Serlachius & Sutton, 2009). The theory of planned behavior (Ajzen, 1991) incorporates the construct of selfefficacy, referring to it as perceived control. In this theory, it is a person’s intentions that are the key variable to target in interventions by changing key cognitions or enhancing the saliency of current helpful beliefs to effect behavior change (Ajzen, 2011). Self-regulation provides another theoretical basis for self-management as it offers a framework for exploring people’s beliefs about their illness (Clark et al., 1991). Leventhal, Brisette, and Leventhal (2003) proposed that people process their thoughts about their illness through two pathways, one concerning cognitive beliefs and one concerning emotional beliefs. These “illness representations” can influence which coping responses are selected. Studies have found that illness representations can influence self-management behaviors. For instance, Gaston,

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Cottrell, and Fullen (2012) found that for adolescents with diabetes, the greater the perceived threat of diabetes the better the person was at selfmonitoring his or her blood glucose levels. Just as there can be different theoretical bases underlying self-management interventions, there have been different approaches to summarizing which components self-management interventions should address. One approach highlights the core processes that self-management involves. Corbin and Strauss (1988) identified three essential processes in the selfmanagement of chronic illness: medical management, behavioral management, and emotional management. Lorig and Holman (2003) have characterized these processes in more detail by identifying five core processes. The first, problem solving, involves the person identifying problems and generating realistic solutions. Incorporated into problem solving is the second skill, decision making, in which the person makes decisions in response to changes in his or her condition. A third skill is the person’s ability to find and utilize appropriate resources. The fourth skill is the person’s ability to work with health care providers to make informed choices about his or her treatment. The fifth skill involves “taking action” and implementing behavioral changes. The alternative approach focuses on the common curriculum elements that interventions cover. For instance, the Chronic Disease Self-Management Program (CDSMP) was developed following 11 focus groups with people with chronic illness and a review of 70 patient education interventions that identified 12 commonly endorsed curriculum components (Lorig et al., 1999). These components are listed in Table 1. A recent review by Mulligan, Steed, and Newman (2009) also identified 12 common components frequently covered in education and self-management interventions (listed in Table 1). There are similarities between the components between these two lists, for instance both include psychological reactions to illness and stress management techniques. However, the components identified in Mulligan et al. (2009) are broader. The components delivered in self-management interventions can be selected according to a specific condition or assembled to provide a generic course suitable for people with a range of chronic illnesses. The most commonly used generic self-management intervention, the 7-week CDSMP, was initially designed for arthritis but is now applied to other chronic diseases. The CDSMP is a peer-led group intervention which family members can also attend (Lorig et al., 2001). In the United Kingdom, the CDSMP was used as the basis for the content of the 6-week Expert Patient Programme (EPP; EPP Community Interest Company, 2007) for people with chronic conditions. It has been argued that participants attending generic courses learn the skills to adapt and apply the information learnt to their

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Quinn et al. Table 1.  The Different Conceptualizations of Self-Management. Mulligan, Steed, and Newman (2009) review of components findings

Lorig et al. (1999) review of components and focus group findings

Information Self-monitoring Skills training Goal setting Promoting readiness for change Enhancing self-efficacy

Using medication appropriately Recognizing and acting on symptoms Adapting for work Managing emergencies Using stress reduction techniques Managing psychological reactions to chronic illness Interacting effectively with health care providers Managing relationships with significant others Using community resources/Giving up smoking/Maintaining diet, nutrition, and exercise      

Problem solving Challenging unhelpful beliefs Coping skills and stress management Managing anxiety and depression Communication and social support Maintaining behavior change

specific condition. In addition people with different chronic illnesses often face similar self-management tasks (Lorig et al., 1999). However, the EPP and CDSM programs have been criticized for their generic content, which are not specific to a particular condition (Chaplin, Hazan, & Wilson, 2012). Some conditions may require specific approaches to support self-management as the particular behaviors that are important for self-management may vary in different long-term conditions (De Silva, 2011; Serlachius & Sutton, 2009). For instance, self-management interventions for chronic neurological conditions that often involve deterioration, such as dementia or MCI may be more effective if they take into account condition-specific factors. Selfmanagement has been used with people with progressive neurological conditions other than dementia (Chaplin et al., 2012). For instance, self-management group interventions have been developed for people with Parkinson’s disease (e.g., Mulligan, Arps, Bancroft, Mountfort, & Polkinghorne, 2011). Relatively little attention has been paid to developing and implementing self-management interventions in dementia or MCI. Four studies have explored what people with dementia and their caregivers think should be included in self-management interventions. Martin, Turner, Wallace, and Bradbury (2013) proposed that in early-stage dementia, self-management

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interventions should emphasize managing life with dementia rather than managing the dementia itself. Mountain and Craig (2012) identified themes such as dealing with dementia alongside other conditions, coping with unexpected symptoms, and the importance of maintaining meaningful roles. Martin, Turner, Wallace, Choudhry, and Bradbury (2013) identified some of the barriers to self-management, such as lack of information about dementia. In addition, Toms, Quinn, Anderson and Clare (2014) interviewed people with early-stage dementia and caregivers about self-mangment and the findings indicated that self-management groups should contain straightforward advice that fostered people’s determination whilst providing them with the skills to solve problems and set realistic goals. Although studies have focused on the content of self-management interventions for people with dementia, there has been little work on implementing such an approach with people with dementia or MCI. There are, however, reports of time-limited group interventions designed for people with dementia or MCI that provide support and aim to enhance the person’s coping and management skills. While these do not explicitly refer to self-management, they often seem to incorporate elements of self-management. For instance, some interventions have focused on helping people to maintain adaptive behaviors (Bender, Constance, Williams, & Harris, 2005), and others have involved goal setting and problem solving (Zarit, Femia, Watson, Rice-Oeschger, & Kakos, 2004). Therefore, examining interventions that contain a substantial number of self-management components would provide information about the feasibility of implementing such an approach for people with dementia or MCI. This review aims to identify group-based psychosocial interventions developed for people with dementia or MCI that incorporate significant elements of self-management. In this review, we will explore which elements of self-management have been included, the theoretical basis of the interventions, as well as, what evidence is available regarding the acceptability and effectiveness of these interventions. The results of the review will be used to help inform the future development of interventions explicitly focused on self-management.

Method Literature Search Three health science databases were originally searched in January 2013: Medline (EBSCO), CINAHL (Cumulative Index to Nursing and Allied Health Literature: EBSCO), and PsycInfo (Proquest). This search was updated in November 2013. Each database was searched from inception. The

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key search areas were dementia (example terms: Dementia or Cognitive Impairment) and group-based intervention (example terms: Self-Management or Support Group). MeSH terms and keywords were derived from the literature and discussion within the research team. Trial searches were conducted in Medline to ensure that applying the chosen terms retrieved relevant articles. Additional searches included a manual check of the ALOIS database and a search of the Current Controlled Trials Database using the term dementia groups. A key author search was conducted in Medline, and a hand search was made of issues of “Dementia: The International Journal of Social Research and Practice.” Finally, Google Scholar was used to search for any articles that cited the included studies.

Study Selection Studies were included if they reported on a group-based intervention for people described as having either dementia or MCI. As the review was focused on people with dementia and MCI, rather than caregivers, the people with dementia or MCI had to be actively involved in the intervention, that is, they had to attend group meetings and take part in the program. Although selfmanagement interventions can be provided individually (Coster & Norman, 2009), this review focuses on group-based interventions as many of the selfmanagement interventions for people with neurological conditions and other conditions have typically been group-based (e.g., Barlow et al., 2002; Battersby et al., 2009; Mulligan et al., 2011; Shevil & Finlayson, 2009). Although self-management interventions are time-limited, their length can vary significantly (Warsi et al., 2004). Based on the review by Warsi et al. (2004), we decided that for an intervention to be included, it had to have a duration of less than 6 months. No date restrictions were applied, but articles had to be published, and studies reported in languages other than English were excluded. As the review primarily focused on which elements of selfmanagement were incorporated into interventions, included studies could use a range of research designs. A final inclusion criterion was that articles had to detail an intervention that incorporated a significant number of self-management components. As there is no precise agreement on the components of self-management, and there has been limited research considering self-management in dementia and MCI, there is little information on which components are most appropriate for this population. We decided to utilize the 12 common elements of self-management identified by Mulligan et al. (2009), as listed in Table 1. This list contains the components frequently delivered across a range of

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chronic conditions and seemed more suitable to interventions for people with MCI and dementia than the components suggested Lorig et al. (1999). The components in Mulligan et al. (2009) are broader and some of the components in Lorig et al. (1999) seemed less applicable to this population, for instance, adapting to work and managing emergencies. In this review, we included studies that contained five or more components. This number was decided upon by reviewing a selection of condition-specific self-management interventions and identifying the minimum number of components in these studies.

Review Process Titles and abstracts were screened by GT and all articles potentially suitable for inclusion were independently reviewed in full text by CQ and GT. Any disagreements about inclusion were resolved through discussion. When articles referred to the same data set, for instance, where an article reported on a follow-up to an included study, this was indicated in the search outcomes. Full details of the screening process are provided in Figure 1. A standardized data extraction form was created and data were extracted by GT. As the categorization of intervention content into the self-management components could be open to interpretation, this coding was reviewed by CQ and any disagreements resolved through discussion.

Data Synthesis A preliminary analysis of the systematic search outcomes indicated that studies had heterogeneous designs, and some articles did not report any measurable outcomes. Therefore, a narrative review of the literature was deemed appropriate. This was undertaken by CQ and reviewed by LC for its accuracy and comprehensiveness.

Results Articles reporting data from the same study at different time-points were considered together. Consequently, 15 intervention studies were included in this review. Two interventions were simply described and no measurable outcomes detailed (Davies-Abbott & MacDonald, 2012; Lee, 2011), and four interventions only provided participant evaluations (Laakkonen et al., 2013; LaBarge & Trtanj, 1995; Martin, Turner, Wallace, Stanley, et al., 2013; Zarit et al., 2004). One article reported qualitative outcomes (Sims & McCrum,

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Inial Retrievals:

Final Retrievals: Medline 937 CINAHL 198 PsychInfo 280

Medline 937 CINAHL 539 PsychInfo 749 (Peer Reviewed & English Language search limits applied)

(Duplicaons removed within and across databases)

Title and Abstract Screening

Full Text Screening (96 papers) Excluded: Not exploring demena/MCI: 3 No intervenon provided: 3 No specific intervenon discussed: 5 Not a group intervenon: 13 Intervenon not me limited: 23 Person with demena/MCI not included: 18