• Better Practice National Conference

Tapping into the heart of dementia care

By Tamara Keogh
Master of Occupational Therapy,
University of Canberra

“It is not enough to give a patient [person] something to do with his [their] hands. You must reach for the heart as well as the hands. It’s the heart that really does the Healing” (Ruggles as cited in Carlova 1962, p250)

Enabling people with dementia to lead fulfilling lives requires adoption of holistic models of care that serve the hearts of those for whom we care (Epp 2003). People living with dementia have the capacity and right to engage in meaningful occupations and live fulfilling lives (Epp 2003; WFOT 2006). To relieve individuals with dementia from the potential negative side effects of the disease, support and guidance from compassionate and empathetic caregivers and health professionals is crucial (Epp 2003). Occupational therapy’s emphasis on person-centred care and enabling engagement in meaningful and purposeful occupations provides a valuable contribution to improving the health, well-being, and quality of life for people with dementia (Arbesman & Lieberman 2011; Bennett, Shand & Liddle 2011; Dooley & Hinojosa 2004; Smit, Willemse, Lange & Pot, 2013; Gitlin et al, 2008; Graff et al, 2006; Gutman & Schindler 2007; Teitelman, Raber & Watts 2010; Wilcock 2006).

Dementia is an umbrella term referring to a group of progressive neurodegenerative diseases (Bennett et al 2011; Gitlin et al 2008; WHO 2010) causing a gradual and irreversible decline in cognitive function (WHO 2010). The aspect of dementia that this discussion will focus on is Alzheimer’s disease (AD), the most common form of dementia (Kuo 2009). However, many of the issues raised are relevant to all types of dementia.

Impact of AD dementia on occupational engagement and participation

Engagement in occupation is the vehicle through which an individual can express him/herself and experience meaning in life (Hocking 2010; Wilcock 2006). The term occupation refers to all the things people need, want, or are expected to do to bring meaning and purpose to their life (Wilcock 2006). The ability of individuals with AD to engage in occupation will change over the course of the disease depending on various personal and environmental factors (Baum & Christiansen 2005; Letts et al 2011a; Smit et al 2013). Knowledge of the disease process and the associated symptoms can contribute to our understanding of some of the factors influencing occupational engagement and participation in life for people with AD. The disease process is progressive and degenerative, gradually eroding one’s cognitive abilities (Smit et al 2013; WHO 2010) and eventually destructing all bodily systems and functioning (K Cmiel, personal communication, October 24, 2013).

Common symptoms associated with AD include; memory impairment (Padilla 2011b), reduced concentration, language and communication difficulties such as aphasia, agnosia, changes in personality, mood swings, reduced judgment, reduced initiative, unengaged behavior, disorientation, disturbed sleep, delusions, aggressive behavior, incontinence issues (Kuo 2009), depression and anxiety, confusion (Lee et al 2006), motor function impairment, and difficulty learning new skills (Oakley, Duran, Fisher & Merritt 2003).

The symptoms experienced by people with AD are unique to the individual (Gitlin et al 2008; Kuo 2009; Teitelman et al 2010). Regardless of the individual’s experience, his or her engagement in various occupations will be increasingly compromised as the disease progresses (Kuo 2013; Letts et al 2011a; Padilla 2011b). As health declines, people with AD engage in fewer physical activities and tend to adopt a sedentary lifestyle (Lee et al 2006). It is common for people with dementia to withdraw from social situations and reduce engagement in occupations, particularly hobbies and leisure activities (Graff et al 2006; Lee et al 2006; Teitelman et al 2010).

A common experience for people with AD is the reduced ability to initiate activities (Lee et al 2006; Smit et al 2013; Teitelman et al 2010). Apathy is a significant obstacle to occupational engagement and social participation (Lee et al 2006). Consequently, many people with AD become dependent on their external environment (Cook as cited in Smit et al 2013, p1) and caregivers to remain engaged (Bennett et al 2011; Gitlin et al 2008; Graff et al 2006). This can be exacerbated in residential care settings where autonomy is reduced and dependency is enhanced (O’Sullivan & Hocking 2006; Smit et al 2013). Generally, as the disease progresses the requirement for assistance and supervision to perform everyday occupations increases (Bennett et al 2011; Lee et al 2006).

The reality of people living with AD can easily become distorted, potentially leading them into an isolated and disturbing existence (K Cmiel, personal communication, October 24, 2013). Altered moods such as depression, anxiety, confusion and delusion can lead to extreme and at times challenging behaviours in people with AD (Gitlin et al 2008; Graff et al 2006; Lee et al 2006). Behavioural issues can be both a consequence and cause of decreased engagement in occupation (Lee et al 2006). They may also be an expression of individuals’ interaction with their social and physical environment (Epp 2003; Letts et al 2011a; Tietelman et al 2010). Extreme behaviors can cause significant distress and reduce the quality of life for people with AD and their caregivers (Gitlin et al 2008; Graff et al 2006; Letts et al 2011b).

The adverse effects of dementia present many barriers to participation in both the mundane and extra-ordinary occupations that weave together to form the fabric of one’s life (Dooley & Hinojosa 2004; Graff et al 2006; Lee et al 2006; Oakley et al 2003; Smit et al 2013). Despite the outlook, it is important to remain optimistic (Raia 2011). A decline in functional status does not imply that people with AD cannot engage in meaningful and purposeful occupations (Epp 2003; Gitlin et al 2008; Graff et al 2006; Lee et al 2006; O’Sullivan & Hocking 2006; Smit et al 2013). In fact many people with AD still possess the desire to remain engaged in occupation (Epp 2003; Lee et al 2006; Smit et al 2013; Teitelman et al 2010). Through the provision of good quality dementia care, people with AD and their caregivers can engage in meaningful occupation and live fulfilling lives despite adversity (Epp 2003; Gitlin et al 2010).

The role of occupational therapy within dementia care

The goal of good dementia care is to improve the quality of life for people with dementia and their caregivers (Dooley & Hinojosa 2004; Epp 2003). The emphasis is on the individuals’ remaining capabilities rather than their deficits (Dooley & Hinojosa; Epp 2003; Lee et al 2006; Padilla 2011a; Raia 2011; Teitelman 2010). This person-centred and holistic focus of care utilises innovative and interactive approaches to adapt or modify not only environments, but situations to meet the capabilities of the person at that point in time (Epp 2003; Gitlin et al 2008; Gutman & Schindler 2007; Letts et al 2011b; Padilla 2011a; Raia 2011; Teitelman et al 2010). Good dementia care respects, trusts, and values the unique identity and historical context of the individual regardless of cognitive function (Graff et al 2006; Kitwood as cited in Epp 2003 p14).

The philosophical underpinnings of occupational therapy are well aligned with the principles of good dementia care (Bennett et al 2011; O’Sullivan & Hocking 2006; Padilla 2011b; Teitelman et al 2010). Occupational therapy is a person-centred health care profession whose primary aim is to improve the health, well-being, and quality of life for individuals and communities by enabling meaningful and purposeful engagement in occupation (Wilcock 2006; WFOT 2010). To achieve this aim, occupational therapists enhance the abilities of the person, and/or adapt/modify the environment or occupation (WFOT 2010). Occupational therapy practice processes are informed by an occupational perspective which considers how the dynamic interplay of various personal, environmental and occupational factors (Baum & Christiansen 2005) influence what, how and why people do what they do (Njelesani, Tang, Jonsson & Polatajko 2012).

In adherence to the World Federation of Occupational Therapists (WFOT) Position Statement on Human Rights (2006), occupational therapists have a specific responsibility to support people with AD and their caregivers to access their right to lead satisfying and fulfilling lives. This responsibility involves enabling participation in a diversity of occupations (Bennett et al 2011) and advocating for people with AD by raising awareness of the prevalence of the disease and the increasing demand for adequate services (Bennett et al 2011; Padilla 2011b).

Although the consequences of AD are irreversible, there are many environmental and occupational variables that can be modified to improve the quality of life for people with AD (Padilla 2011; Oakley et al 2003). According to Gitlin et al (2008), the two most important strategies for promoting positive and successful occupational engagement for people with dementia are: 1) modifying lifelong occupations by reducing the demand requirements; and 2) simplifying the environmental context. Implementing these strategies can also help to alleviate symptoms of stress, frustration and challenging behaviors (Gitlin et al 2008).
Occupational therapists can play an important role in dementia care (O’Sullivan & Hocking 2006) by providing opportunities for engagement in meaningful occupations specifically tailored to the individual’s interests, previous roles, and remaining capabilities (Gitlin et al 2008). Occupational therapists’ person- and occupation- focused practice, combined with their expertise in environmental and occupational adaptation, provide a valuable contribution to the delivery of good-quality dementia care (Bennett et al 2011; Padilla 2011b).

Provision of a person and occupation focused practice within dementia care

There is good-to-strong evidence supporting the contribution of occupational therapy to the delivery of good dementia care (Arbesman & Lieberman 2011; Gitlin et al 2008; Graff et al 2006; Padilla 2011a). Occupational therapy interventions can be extremely effective in; identifying occupational performance issues (Arbesman & Lieberman, 2011) and goals, and enhancing meaningful occupational engagement and participation for people with dementia (Arbesman & Lieberman 2011; Dooley & Hinojosa 2004; Gitlin et al 2008; Graff et al 2006; Smit et al 2013).

Occupational therapy interventions focused on facilitating individualised occupational engagement for people with AD can be useful for: enhancing cognitive performance (Gitlin et al 2008); increasing independence and participation in daily activities; reducing caregiver burden (Arbesman & Lieberman, 2011; Dooley & Hinojosa 2004; Gitlin et al 2008; Graff et al 2006); promoting social interaction (Arbesman & Lieberman 2011; Letts et al 2011a); encouraging positive self-expression; reducing challenging behaviors; and promoting a sense of purpose in life (Gitlin et al 2008).

Occupational therapy strategies that modify the demands of an occupation or the environment can enhance occupational performance and participation, particularly in self-care and leisure occupations (Arbesman & Lieberman 2011; Padilla 2011a). Multifaceted interventions involving modifications, compensatory strategies and individualised caregiver training can be a cost–effective approach for improving everyday functioning of people with dementia (Graff et al 2006).

Overall, the evidence suggests that facilitating engagement in pleasurable and meaningful occupations can improve the everyday functioning and quality of life for people living with AD and their caregivers (Dooley & Hinojosa 2004; Gitlin et al 2008; Graff et al 2006; Letts et al 2011). However, the provision of occupation-focused practice processes can be compromised in some dementia care settings (Arbesman & Lieberman 2011; Bennett et al 2011; O’Sullivan & Hocking 2006; Smit et al 2013).

Dementia care can present many challenges for caregivers and health professionals (Bennett et al 2011; Dooley & Hinojosa 2004; Letts et al 2011; Padilla 2011b). Understanding the interests and aspirations of people with AD and their caregivers is crucial to the delivery of a person- and occupation-focused practice approach (Gitlin et al 2008; Padilla 2011b). Eliciting the meaning people associate with occupations is also essential for enabling meaningful occupational engagement and participation (Smit et al 2013). However, gathering this information can be an overwhelming task when individuals’ capacity to express themselves and participate is inhibited due to diminishing cognitive and physical abilities (Lee et al 2006; Smit et al 2013).

Dementia care is a complex and specialist form of care requiring resources and expertise that may not be viable in some practice contexts (Bennett et al 2011). Limitations within the practice context can compromise the capacity of occupational therapists to deliver good dementia care (Bennett et al 2011). These limitations may include; time constraints, organisational staffing and role restrictions, reduced knowledge and skill levels of staff, limited access to therapeutic resources (Bennett et al 2011), and institutional power (Epp 2003). Such limitations can lead to the delivery of superficial practice approaches that fail to address the individual needs and aspirations of people with AD (Bennett et al 2011; O’Sullivan & Hocking 2006).

Implications for practice and research

The complex and challenging nature of dementia care invites occupational therapists to transcend traditional models of care and embrace innovative practice processes (Epp 2003; Oakley et al 2003; Padilla 2011b). Experiences from the old culture of dementia care (Epp 2003) highlight that biomedical models of care, preoccupied with the disease and treatment of symptoms do not improve the quality of life for persons with dementia (Epp 2003; R Fleming, personal communication, October 17, 2013). The progressive and unpredictable nature of the disease process (Kuo 2009) requires fluid and flexible occupational therapy practice processes (Epp 2003; Graff et al 2006; Teitelman 2010) that focus on wellness rather than illness (Kendig 2010).

Occupational therapy practice processes need to be open to exercise trial and error and therapists need to be willing to persevere despite adversity (K Cmiel, personal communication, October 24, 2013). The delivery of meaningful therapeutic approaches requires knowledge of a person’s occupational history, existing capabilities, interests, and preferences (Gitlin et al 2008; Lee et al 2006; Smit et al 2013). The early to mid- stages of dementia, when cognitive impairment is typically mild, are crucial for eliciting such information (Lee et al 2006). Occupational therapists need to effectively utilise the early to mid-stages of dementia to ensure better outcomes of care as the disease progresses (K Cmiel, personal communication, October 24, 2013).

Occupational therapists working in dementia care require a specialist set of expertise (Bennett et al 2011; Letts et al 2011a; Padilla 2011b). The most important of these is the ability to connect and communicate with the people they are caring for on a deeper level (Epp 2003; O’Sullivan & Hocking 2006). This requires compassion, empathy and a willingness to understand the individual as an occupational being. Fine-tuned observational skills and sensitivity to subtle ways of self-expression for a person with dementia will greatly assist occupational therapists to respond appropriately and develop meaningful interventions (Raia 2011; Teitelman et al 2010).

The delivery of high-quality dementia care requires occupational therapists to adhere to an evidence- and occupation-based practice approach (Arbesman & Lieberman 2011; Egan, Hobson & Fearing 2006; Padilla 2011b), ideally conducted in a collaborative and trans- disciplinary manner (Arbesman & Lieberman 2011). High-quality and rigorous qualitative research can be a useful strategy for furthering our understanding of the unique lived experience of those living with dementia and their caregivers (Bennett et al 2011; Epp 2003; Lee et al 2006; Letts et al 2011a). It can also be useful for investigating the barriers to occupational therapy service delivery (Bennett et al 2011). However, this is a challenging area of research and warrants further investigation (Bennett et al 2011; Egan et al 2006; Epp 2003; Lee et al 2006).

Further high-quality research into the most effective ways to deliver person-centred practice approaches within dementia care is needed (Epp 2003). This information would be particularly useful for assisting therapists to better identify and prioritise occupational performance issues and goals for people with AD (Egan et al 2006; Graff et al 2006). Most importantly, further evidence is needed to support the relationship between occupation and health as it relates to people living with dementia (Gutman & Schindler 2007). This would greatly assist occupational therapists to implement and advocate for more creative and innovative practice processes (Padilla 2011).

Conclusion

Dementia care provides caregivers and health professionals a wonderful, yet challenging opportunity to explore creative and innovative practice processes (Padilla 2011a; Raia 2011). Good dementia care requires caregivers and health professionals to transcend biomedical models of care and embrace fluid and holistic models that serve the hearts of those whom we care for. Occupational therapy can contribute to the delivery of good dementia care by tapping into the individuals’ inherent potential and remaining capabilities and utilising this information to guide practice processes (Bennett et al 2011; Teitelman et al 2010). Occupational therapists can best support people with dementia and their caregivers to live fulfilling lives by connecting with the hearts of those they care for and facilitating meaningful occupational engagement and participation.

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