Life With Dementia. What Is It?

It was acknowledged that living with dementia includes experiencing both negative and positive emotions (Elford et al., 2005). Nine studies in this metasynthesis revealed that the patients experienced negative feelings during reminiscence sessions. This overarching theme has three key metaphors: Grief, vulnerability, and sense of isolation.

Grief

This metaphor of the overarching theme of painful memories and emotional turmoil was prevalent throughout five studies in the synthesis. Most patients in the included studies mentioned that grief, sadness, and regret originated from emotional turmoil from past experiences (Chao et al., 2008; MacKinlay, 2009; Karlsson et al., 2014; Kwak et al., 2017; Williams et al., 2013). Others reported it painful to think of and openly discuss certain events from their past (Chao et al., 2008; MacKinlay, 2009; Karlsson et al., 2014; Kwak et al., 2017; Williams et al., 2013). The 10 older adults in Chao and colleagues’ (2008) study described how recalling significant memories provoked a variety of negative emotions including fear, sadness, anger, and anxiety. When immersion in these past memories evoked negative sentiments, patients admitted that at times, it became difficult to continue talking.

The therapists in Chao and colleagues’ (2008) study attempted to carefully evaluate the patient’s reactions and their abilities to manage this negative emotional turmoil. In some situations, residents required referral for further assistance and assessment (Chao et al., 2008). Feelings of guilt, grief, and despondency seemed to be magnified for patients during their recollection of memories (Karlsson et al., 2014).

During the narration of stories from five patients with moderate stages of dementia, the patients expressed negative views of their relationship with the disease and dissatisfaction with their own lives and achievements (Russell & Timmons, 2009). Most of them described their lives as dreary and difficult (Russell & Timmons, 2009). A lot of negative emotions were provoked during storytelling including feelings of dishonor, frustration, irritation, and exasperation (Williams et al., 2013). Clearly, these negative emotions garnered unsavory outcomes for the morale of patients in reminiscence sessions. However, most patients considered unearthing these negative memories as having twofold benefits (Chao et al., 2008; MacKinlay, 2009; Karlsson et al., 2014; Kwak et al., 2017; Williams et al., 2013). One of these benefits includes the opportunity for sharing and reflecting on personal experiences, resulting in the re-evaluation of unresolved past conflicts. The second benefit is related to the expression of painful memories in the presence of a group, which effects a state of catharsis and commiseration.

Vulnerability. Vulnerability refers to a state in which an individual is aware of their potential to be exposed to harm (MacKinlay, 2009; MacKinlay & Trevitt, 2010). Sadness and grief were the universal emotions that intensified the feelings of vulnerability among patients living with dementia (Chao et al., 2008; MacKinlay & Trevitt, 2010). Vulnerability is already greater for patients with dementia, and only becomes further exacerbated as patients experience crisis, life transition, and deterioration of health (Chao et al., 2008; MacKinlay, 2009; MacKinlay & Trevitt, 2010). Reminiscence is a double-edged weapon; it can both revive feelings of bitterness and grief (Kwak et al., 2017) and generate feelings of pleasure and happiness (Elford et al., 2005).

Reminiscence may integrate negative aspects of patients’ past events, such as the death of a family member, as well as highlight gaps in the patient’s memory. This resulted in a variety of negative emotions for patients with dementia (Kwak et al., 2017). Vulnerability, loss, hopelessness, change of roles, and struggle were cited by most patients in MacKinlay and Trevitt’s (2010) study as negative effects from reminiscence.

Sense of isolation. Patients with dementia often struggle with feelings of isolation and disconnectedness with society and within their daily lives (Elford et al., 2005; Karlsson et al., 2014; Mackinlay, 2009; Williams et al., 2013). This isolation can be perpetuated by stereotyping due to ignorance of issues associated with dementia, leading to feelings of being jeopardized, disheartened, and disengaged (Elford et al., 2005; Karlsson et al., 2014; Mackinlay, 2009; Williams et al., 2013). Some patients in Alford and colleagues’ (2005) study mentioned perceiving a disparity between their present and past selves. These patients described feeling as if the past was a completely different world from the present (Elford et al., 2005). They chose to think largely about the past rather than the present, and described the past as being a very different time in terms of habits and community values.

The following quote illustrates this point, “when we lived in a small street, everybody was friendly – you never passed anybody, and if you passed them 2 or 3 times a day, you’d still say’’hello’’, but all that’s gone” (Elford et al., 2005, p. 308). Patients who felt that they were valued and integrated in the past but did not feel the same way about their current lives struggled with this duality (Elford et al., 2005). As a result, they spent much of their time alone and became withdrawn and disengaged. This was related to difficulties with initiating conversation and perceived loss of control (Elford et al., 2005). Interestingly, some of these patients preferred to engage in reminiscence with care staff rather than their families, citing significant generational gaps and/or lack of interest of families in hearing about their stories as their reasoning (Elford et al., 2005).

Some patients with moderate stage dementia in MacKinlay’s (2009) study expressed consistent difficulties in placing themselves in a context of time, dealing with feelings of loneliness and isolation, and fully understanding facilitators’ questions and instructions during reminiscence sessions. These challenges may have been aggravated through reminiscence sessions, as one patient in MacKinlay’s (2009) study revealed, “my mind keeps going up around and around and I really don’t want nothing what to do with her, because she has different, has different, she is different” (p. 324). This quote demonstrates the patient’s struggles in communicating their ideas during a reminiscence session. Other patients in Karlsson and colleagues’ (2014) study reported that they experienced social disconnectedness because of loss of abilities during reminiscence sessions.

Strong Internal Locus of Control

This theme exemplifies how reminiscence enhances patients’ confidence, ability to adapt and cope, and transcendence. All 11 studies in this metasynthesis highlighted how patients developed an internal force that helped them to adapt and transcend their condition and the struggles that accompanied. This overarching theme has three key metaphors: Adjusting and coping, confidence, and transcendence.

Adjustment and Coping

Reminiscence is a significant natural coping mechanism and is considered to be part of the adjustment process of aging (MacKinlay, 2009). A reliance on the inner self in coping with dementia was articulated by most patients in the included studies (Chao et al., 2008; MacKinlay, 2009; MacKinlay & Trevitt, 2010; Karlsson et al., 2014). Both MacKinlay (2009) and MacKinlay and Trevitt (2010) identified how reminiscence contributed to the internal control which resulted in adapting, adjusting, and coping for patients with dementia. Patients in these two studies acquired a broad range of coping strategies from reminiscence sessions. For example, reminiscence helped patients find meaning in their lives through reflection on their past experiences (MacKinlay, 2009; MacKinlay & Trevitt, 2010). Patients with dementia found that practicing reminiscence served as a protective measure that assisted them in combating adversities and impairments through the development of coping strategies such as maintaining a sense of humor and cultivating optimism (MacKinlay, 2009; MacKinlay & Trevitt, 2010).

Most patients in the included studies (i.e. Chao et al., 2008; MacKinlay, 2009; Karlsson et al., 2014) exemplified methods of coping with losses, unresolved conflicts, and disabilities of aging. Shik et al. (2009) affirmed that reminiscence served as a channel for adapting, multi-dimensional experience, and successfully performing various activities. An example of these activities is illustrated in MacKinlay’s (2009) and MacKinlay and Trevitt’s (2010) studies, where patients performed spiritual rituals in reminiscence. The patients in these two studies reported that the trust in God that developed during spiritual reminiscence helped them cope with the vulnerability of not being able to recall memories (MacKinlay, 2009; MacKinlay & Trevitt, 2010). The findings indicated that spiritual reminiscence enhanced the patients’ wisdom, optimism, sense of identification, and enthusiasm for the other participants (MacKinlay, 2009; MacKinlay & Trevitt, 2010).

Williams et al. (2013) discovered in an autoethnography study that after reminiscence sessions, 12 patients pointed out improvement in sense of self-esteem, self-respect, personal identity and belonging, and safeguarding autonomy. For some patients, the process of adjusting to a diagnosis of dementia resulted in shifting identity (Karlsson et al., 2014). Acquiring adjustment and coping strategies in life, a sense of independence in fulfilling work, and trust in themselves served as sources of optimism for these patients (Karlsson et al., 2014). Elford et al. (2005) asserted that reviewing memories seems to be a cathartic process for reconstructing memory. It should be noted that patients’ capacities for managing negative feelings, maintaining intimacy, and improving sense of achievement were magnified after reminiscence sessions (Chao et al., 2008).

Confidence. Further benefits of reminiscence include improvements in patient’s ability to develop self-confidence and independence (Karlsson et al., 2014; Russell & Timmons, 2009). Patients deemed their engagement in reminiscence activities as proof of the intactness of their memory, which enhanced their self-esteem (Diamond, 2016; Karlsson et al., 2014). Recollecting memories contributed to the promotion of harmony, conformity, obedience to authority, and interpersonal stimulation in patients with dementia (Shik et al., 2009). All of these acquired attitudes in the inner world of participants prompted their motivation, sense of purpose, emotional closeness, integration, and dignity by reflecting on shortcomings and finding meaning in loss (Shik et al., 2009).

Karlsson et al. (2014) described how the reminiscence process influenced patients’ behaviors and actions, including promoting self-reliance and sense of purpose and meaning. When patients reviewed and looked back on their lives, they all seemed to have come to a sense of reconciliation where the majority have feelings of gratitude toward living (Karlsson et al., 2014). The patients in Diamond’s (2006) thesis expressed a great sense of empathy, eagerness, feelings of ease, and sense of purpose and meaning. These inner feelings meant that patients felt valued as people, developed a positive sense of self, and viewed themselves as unique individuals not defined by their disease (Diamond, 2016). All these internal loci of control resulted in overarching feelings of contentment, maturation, and strong confidence.

Transcendence. This metaphor represents the patients’ ability to move beyond the detrimental effects of dementia and the resulting development of insights into their beliefs, values, and aspirations. The level of transcendence achieved through reminiscence is impacted by differences in age, gender, culture, and ethnicity of patients (Shik et al., 2009). Chinese patients, for example, are held to very high expectations in reminiscence because Chinese older adults are described as valuing family and tradition, harmony, conformability, and obedience to authority (Shik et al., 2009). In a study conducted among patients in this population, Shik et al. (2009) used culturally based props to trigger patients’ distant memories. Their cultural characteristics can be traced back to the promotion of transcendence during reminiscence sessions. Reminiscence served as an emotional outlet through which patients could receive emotional support and eventually reconstruct negative emotions into positive self-assurance (Shik et al., 2009).

These negative emotions, in part, stemmed from the stigma experienced by patients living with dementia (Shik et al., 2009). Most patients reported positive experiences as a result of reminiscence, where, for example, reminiscence afforded patients a broader sense of self-understanding (MacKinlay, 2009). Others acknowledged positive experiences related to sharing knowledge with others, demonstrating the ability of patients living with dementia to transcend their condition (MacKinlay, 2009). In this study, patients indicated that the recollection of meaningful memories contributed to the clarification and simplification of complex concepts. MacKinlay and Trevitt (2010) discussed the ability of elderly with dementia to transcend. The patients in MacKinlay and Trevitt’s (2010) study developed strategies to accept changes in later life, including losses of significant relationships and increasing disability.

Through systematic combination and translation of the results of current qualitative studies, this metasynthesis contributes to a deeper understanding of patients’ perspectives and the meanings behind their experiences in reminiscence activities. The first overarching theme considered the finding that enjoyment seems to be significant in making reminiscence activities meaningful for patients with dementia. It has been shown that the positive experiences in reminiscence outweigh the negative experiences among participants. The findings from the first overarching theme suggest that it is important for healthcare providers who care for patients with dementia to deeply understand that reminiscence should create a joyful environment (Chao et al., 2008; Diamond, 2016; Elford et al., 2005; Karlsson et al., 2014; Kwak et al., 2017; Pöllänen & Hirsimäki, 2014; Williams et al., 2013).

It is important to use reminiscence to foster feelings of pleasure and bring cheerfulness into the intervention, thus improving patients’ well-being and quality of life (Williams et al., 2013). Some authors suggest that reminiscence activities could become meaningful if they are built around the patient’s earlier skills and interests (Elford et al., 2005; MacKinlay & Trevitt, 2010; Pöllänen & Hirsimäki, 2014). This carries the notion that reminiscence activities in nursing practice could be improved by tailoring them to the preserved capabilities and hidden strengths in the patients’ past skills. Many patients stressed the importance of reminiscence activities that related to past lifestyles; for some, these activities provided valuable comfort and/or pleasure (Elford et al., 2005).

The second overarching theme indicated that reminiscence activities serve as a substitutional means of promoting communication, which helps patients with dementia to practice and develop verbal and non-verbal communication skills. Some authors (e.g. Elford et al., 2005; Kwak et al., 2017) point out that sharing reminiscence activities with others serves as a line of communication which fosters reciprocal understanding between all parties. Other authors indicate that reminiscence activities served as substitutes of communication means for patients who suffer from sensory disabilities such as vision or hearing problems (Chao et al., 2008; Elford et al., 2005; Pöllänen and Hirsimäki, 2014; Shik et al., 2009). Reminiscence can be effective among patients with dementia as a way of facilitating communication and interpersonal connections (Elford et al., 2005; Shik et al., 2009). The findings from this overarching theme propose a call for future research to examine and describe how reminiscence sessions develop the communication skills of patients living with dementia.