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Balancing the struggle to live with dementia: a systematic meta-synthesis of coping

BMC Geriatrics volume 19, Article number: 295 (2019) Cite this article

Abstract

Background

People with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. They often have difficulties with orientation, loss of roll function, and fear about the future, and need help from others. An increasing body of literature also focuses on how people with dementia search for meaning and maintaining of quality to life, and how they find strategies to live with dementia. A review of the scientific literature on coping and dementia is warranted and can help to advice and inform healthcare personnel and decision makers on how they can support and plan for appropriate healthcare services for people with dementia. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding people with dementia’s experience of coping.

Methods

We conducted a systematic, computerised search of Medline, Embase, Cinahl Complete, PsycINFO and Age Line combining MeSH terms and text words for different types of dementia with different descriptions of experience. Studies comprised 1) a sample of people with dementia, 2) a qualitative interview as a research method and 3) a description of experiences of coping were included. The search resulted in 7129 articles, of which 163 were read in full text, 80 were excluded due to the exclusion criteria or low quality according. The analysis was conducted in line with qualitative content analyses.

Results

This interpretative qualitative meta-synthesis included 74 articles of good quality encompassing interviews with 955 persons with dementia. The material revealed two main resources of coping: (1) Humour and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation A comprehensive understanding of the categories led to the latent theme: Balancing the struggle of living with dementia.

Conclusion

This meta-synthesis indicates that people with dementia cope in different ways and using several parallel strategies. This insight is essential in dementia care to facilitate a supportive environment.

Peer Review reports

Background

Dementia is a common term for a chronic functional decline caused by disease or damage in the brain, where Alzheimer’s disease is the most common [1, 2]. During progression of this decline the need for help from others are unavoidable and the focus moves from maintenance of daily functioning and activities in early phase towards comfort and well-being in late stage [3]. In the late, severe stage of dementia, the patients will be fully dependent on others and patients will eventually die [2, 4]. According to Alzheimer’s Disease International [5], the World Health Organization [6] and the Norwegian Dementia Plan 2020 [7], dementia treatment and care need to be based on the values of person-centered care [8]. Thus, in providing the appropriate treatment and support in accordance to people with dementia’s own needs and fundamental human rights, knowledge about how people with dementia experience and cope with their current and future life-situation is fundamental.

To live with dementia is an idiosyncratic experience as dementia influence each individual differently. Thus, a person becoming ill with a dementia will in different ways become dependent on own and surrounding resources for coping as the illness progresses. The concept ‘coping’ refers to the struggle to overcome and manage the stress from adapting in life [9]. Coping strategies are defined as “cognitive and behavioural efforts to master, reduce, or tolerate the internal and/ or external demands that are created by the stressful transaction” (p.843) [10]. Folkman & Lazarus’ transactional perspective on coping highlights people and surrounding environment to be in an ongoing reciprocal relationship. Life-stressors are constantly being evaluated in a process of appraisals where perceptions of available internal and external resources (primary appraisals) affect choice of strategies used to cope with the situation (secondary appraisal) [11]. The strategies involve approaches aiming to alter the stressful situation (i.e. problem-focused coping strategies), as well as regulation of emotional distress associated with the situation (i.e. emotion-focused coping strategies) [11, 12]. Thus, the strategies for coping depend on appraisals of the situational context and of personal factors; altogether constituting the individual’s available coping resources [11, 13]. Normally, people alternate between problem- and emotional-focused coping strategies, but in more severe and acute stress the use of all available strategies is triggered in a global coping response [11, 14,15,16,17]. A global coping response is defined as a response in acute and severe stress where you use: “combinations of almost all of the problem-focused and emotion-focused coping strategies, indicating the use of a substantial global coping response” ([17]p., 949).

During the last decade, a growing body of research has emerged that focus on how people experience and cope with dementia [18,19,20]. A review of the scientific literature on coping and dementia is therefore warranted and can help to advice and inform healthcare personnel, decision makers and informal carers on how they can support and plan for appropriate healthcare services for people with dementia.

The review

Design

An interpretative qualitative meta-synthesis was conducted [21, 22]. The review includes cross-sectional and longitudinal qualitative interview-studies describing coping in different ways.

Methods

The methodology used for this meta-synthesis has also been used by some of the authors in previous published work [23, 24]. We conducted a systematic search combining different words for dementia and experience. The search was conducted in five databases: Age Line, Cinahl Complete, Embase, Medline and PsycINFO. See Table 1 for an overview of the search strategy as a whole. The search was restricted to peer-reviewed qualitative research studies in English language published between January 2004 and June 2018. We identified 7129 articles, of which 163 qualified for inclusion. Details of the inclusion og exclusion process is described in flowchart, Fig. 1.

Table 1 Search terms
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Fig. 1
figure 1

Flow chart, literature search

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To minimize the risk of mistakes and ensure consistency in quality, the screening of articles was performed by pairs of authors, in line with PRISMA standard [25]. Disagreements was resolved by discussions in the whole group. Potential articles were read in full text and included if: (1) the sample consisted of people with dementia only; (2) the research method was qualitative interview; (3) the voice of people with dementia was clearly described; and (4) the article included a description of experiences of coping. Articles were excluded if: (1) dementia was described as probable or possible; (2) there was a mixed sample with people with dementia and people with other diagnoses, and (3) the paper described experience from a specific intervention.

Assessment of the quality of the studies

Eighty-three of the articles were reviewed according to the CASP (Critical Appraisal Skills Programme) criteria for qualitative studies [26]. The quality of the studies was also assessed by pairs of authors. If disagreement that could not be resolved by discussion occurred, the group involved one of the other authors. We used the following nine criteria of the CASP: (1) a clear statement of aims; (2) appropriate choice of the method; (3) appropriate research design; (4) congruence between the recruitment strategy, aims and research; (5) the data collection method addresses the research issue; (6) a relationship between the researcher and the participant was considered; (7) ethical issues were considered; (8) the process of data analysis was sufficiently rigorous; and (9) a clear statement of the findings. Each criterion was given an equal weight (i.e., 1 point) for a maximum score of nine for each quality assessment per article. We considered a score of nine as high methodological quality and a score of 7–8 points was considered moderate quality (see Table 2). We included studies with a moderate or high quality. Nine studies were excluded due to low quality and scores below 7.

Table 2 Quality assessment of studies included
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We included a total of 74 articles interviewing 995 people with dementia in the meta-synthesis. The studies are presented in Table 3. Fifty-three of the articles emphasized on the participants’ ability to provide informed consent and verbally articulate their experiences, but only 21 described the participants’ stage of dementia or level of cognitive function. However, all studies provided information about participants’ housing situation and relocation to long-term care can serve as an indicator of dementia being in a moderate to severe stage. Among the included studies,13 studies interviewed participants living in nursing homes or other care facilities, 57 studies included participants living at home, and 4 studies had a mixed sample. Individual interviews constituted the main data and were described in 64 of the studies. Four studies were based on interviews with dyads or pairs consisting of person with dementia and health care personnel, and six studies were based on focus group interviews including people with dementia. Most studies conducted single interviews with the participants, but 17 studies were based on repeated interviews and of those, nine studies carried out interviews over a period of more than 2 months and can be characterized as longitudinal studies.

Table 3 Presentation of studies included
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Data abstraction and synthesis

The abstraction and synthesis were conducted according to the principles of the interpretative synthesis [99]. We focused on the development of concepts based on the data from primary studies and further developed and specified theories that integrated the concepts [100]. The analysis built on the principles of qualitative content analyses [101] and comprised six steps: In the first step, pairs of authors (TLI, EKG, EWT and SE) read all the 74 papers. Results from the papers describing coping, were extracted as direct citations into “meaning units” (TLI and SE); a form created for further analysis [101]. In the second step, two of the authors (TLI and SE) condensed the meaning units. This is a process were the content of the direct citation is being extracted using the meaning unit’s own language. In the third step, two other authors (GHB and ASH) labelled the condensed meaning units with codes in order to organize the material. In the fourth step all authors compared codes and identified similarities and differences in order to structure and gathering the codes into subcategories. In the fifth step, the eight subcategories identified through this process were ultimately gathered into four categories with subcategories presenting the manifest meaning of the material. Finally, in the sixth step, the comprehensive understanding phase, we summarized and reflected upon the results consisting of resources and strategies, in order to reach a presentation of the text as one overall latent theme [101].

Results

The 74 articles included in this meta-synthesis described challenges and sources of stress that people with dementia encounters. The studies reported experience of loss of autonomy, control and connection. The participants see themselves as “different” and no longer normal [32]. The memory problems, other symptoms of dementia and the unpredictable progression of the disease lead to worry and anxiety. The participants experience that their needs change; the need to be looked after and to be taken care of increases, and furthermore, new social and emotional needs arise [36]. The studies describe the experience of being stigmatized, feeling embarrassed or stupid. Dementia threatens the identity and sense of worth and changes their roles and the relationship to others [30, 50]. The participants state that taking part in social events and meaningful activities become more difficult. Consequently, some feel that they lack competency and may not be contributing as much as they would like, for instance in household and society. Loss of social contact and meaningful activities lead to loneliness, isolation, emptiness or boredom and many people experience that it is necessary to adjust life expectations [50, 89]. The decline in function and abilities have great impact on daily life and some express that life loses its purpose and that happiness is gone. The participants describe concerns for the future [82]. The progression of dementia, and thereby the future, is unpredictable.

Coping with dementia

The experience of challenges and stress forms the backdrop for the experience of coping and the coping strategies people with dementia use. It is interesting to note that only two of the 74 included studies explicitly aimed to explore coping [18, 47].

The material emphasized two essential resources of coping that goes across the entire material: humour and social and emotional support. Humour is a personal resource that can be used actively to handle the symptoms of dementia. By laughing instead of crying, humour can be used as a safeguard in overwhelming situations. An ability to see the funny side can reduce stress, distract negative mood and elicit positive emotions. Social and emotional support are external resources of coping and describes the backing and practical help received from others; family, friends and other relations. Social support is important for coping with rising demands in life with dementia (See Table 4).

Table 4 Results coping resources: Examples of condensed meaning units
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The analysis revealed four overall categories of coping strategies: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation (See Table 5):

Table 5 Results coping strategies: Overview of categories and subcategories with examples of condensed meaning units
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Keep going and holding on to life as usual

This category relates to people with dementia continuing doing the same things they used to, taking 1 day at a time. They try to live their lives in the same way and hold on to the same activities as before they became ill. The underlying reason for this may be that they wish to do as much as they can before the progression of dementia reduces their abilities. The focus is on the present and to holding on to established routines and social relations. The category consists of the following subcategories: (a) Preserving identity; (b) Normalising the situation; and (c) Contributing to society.

Preserving identity refers to holding on to the identity that defines them as a person. They put effort into maintaining social roles and relations. They remind themselves and others of past achievements to preserve identity and self-esteem. By holding on to remaining aspects of themselves, they continue to live with the same sense of self as they have had for years.

Normalising the situation describes how people with dementia attempt to carry on with life and how they try to maintain a normal situation in daily life. It also refers to the effort they make to convince themselves and others that difficulties of memory loss or other challenges following dementia can be understood and explained as normal. They often compare themselves with others who forget things in order to normalise their own symptoms. By using this strategy, they seek to reduce their own worry and avoid negative response from surrounding people.

Contributing to society refers to the value of still being able to do meaningful activities and being useful. Many express a need or wish to use their remaining abilities and resources to help family or others for example by volunteer work.

Adapting and adjusting to the demands from the situation

This category of coping describes how people adapt and adjust by changing their own expectations towards themselves and activities they can perform. They seek information about dementia to be able to plan and prepare for the future. It also involves being active and doing changes in order to handle the situation. The category consists of the subcategories: (a) Taking control and compensating; and (b) Reframing identity.

Taking control and compensating describes what the person does to continue being both physically and cognitively active. Additionally, in order to make life work despite their cognitive decline they find ways of doing things differently They emphasize that having regular routines, writing down important things and using technological aids are good tools to help them maintain function. The subcategory also relates to the willingness to ask for and accept practical help from others, decide who should know about the diagnosis, and stick to familiar routines and places.

Reframing identity refers to how the person build identity by thinking differently about themselves and comparing their lives to the lives of those who are worse off. They construct a new self-narrative as one more fortunate, which gives hope for the future and appreciation of life. Also, by being active in making decisions in life, they take responsibility for own personhood and autonomy.

Accepting the situation

This category includes acknowledgement of the situation and the diagnosis of dementia. It is an acceptance of memory loss and other symptoms of dementia and a recognition of what they can do for themselves and when assistance from others is needed. The person with dementia reconciles with life as it is, though it can be a resigned acceptance. This category consists of the subcategory position in life.

Position in life is about acknowledging the dementia diagnosis and the consequences of the disease and focusing on strengths and possibilities. Dementia is described as a challenge or a problem, not “the end of the world”. Some have lived through challenging situations earlier in life, either it is related to health or e.g. having lived through a war. The positive orientation can be understood as a desire of living well, not letting dementia take over their life and having hopes for the future regardless the prospect.

Avoiding the situation

People with dementia may experience challenging situations in which they feel unskilled or inadequate due to the cognitive decline. In addition, having a diagnosis of dementia and experience the condition develop can be stressful and threatening to the experience of security and sense of self. Coping by trying to avoid stressful situations could concern an active resistance to adaption, change or to accepting help because this may imply accepting dementia and the progression of the symptoms. The person with dementia can use strategies that actively redirects focus or refrain from the exposed situations. For instance, by changing subject in a conversation or avoiding situations by using distractions such as being active, keeping occupied or compensate. The focus is less on handling a “threat” that emerges, but more on keeping a distance and avoiding it in advance. This can include not thinking and talking about the future, withdrawal and not taking initiative because this could mean being exposed as cognitively impaired.

Balancing the struggle of living with dementia

The four categories of strategies presented in the material do not necessarily follow each other in a linear process of coping ending in acceptance of the situation. Instead, they should be seen as potential strategies when meeting challenges and stress following dementia. The participants reported using several strategies at the same time and they employed different strategies depending on appraisals of the demands from the situation they encountered. Hence, the choice of strategies will be influenced by not only available resources of coping, but also the situation and context, and several strategies can be used for the same situation and challenge. The coping process and the four strategies described by people with dementia can be summed up in the overall theme balancing the struggle of living with dementia.

Discussion

The main findings from this study revealed two main resources of coping: (1) Humour; and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation. The coping process and the four strategies can be summarized in the theme; balancing the struggle of living with dementia.

The two studies in our data material explicitly exploring coping in people with dementia had different perspective. Frazer et al. [47] studied how women who live alone with dementia cope in their everyday lives. They found that their participants were actively engaged in re-constructing their sense of self, using a variety of coping strategies. Sharp [18] described how people with dementia cope with the stress they experienced. The author highlighted the topic of learning to do things differently and establishing coping strategies that provide control. Her participants described individual potential for adapting and coping with the stressful aspects of living with dementia. Even though the two papers do not present their interview guides, there are reasons to believe that the participants have been asked to describe their ways of coping.

However, most of the papers included in our study did not ask the participants explicitly about their coping strategies, all articles described different ways in which people with dementia cope with challenges in their daily lives. Coping strategies are responses to stress such as specific challenges and daily struggles. Our findings describe both problem- and emotion- focused coping strategies. A problem-focused strategy can be to do something yourself, but it can also mean letting others do something for you when the aim is to minimize the stressful situation. Emotion-focused strategies may relieve a person’s situation by creating distance to the challenges, for instance by avoiding confrontations regarding symptoms and thereby shielding themselves from the stressful situation. The papers included in our study describe that people with dementia often use several strategies simultaneously. This is in line with the literature which report that more severe and acute stress situations demand the use of all available strategies and that people alternate between different strategies [11, 14,15,16]. Several papers convey how people with dementia keep going despite the rising challenges they meet due to progression of their cognitive and functional decline. In the early phase of the condition, many people have a strong will to continue living life as normal. This might be possible if one manages to mobilise available internal and external resources when approaching the specific situations [11]. Humour can be an effective coping strategy for making a threatening situation more harmless and thereby reducing stress. The experienced threats can vaporize if the person is able to make a joke and cover up the graveness of the situation. Through humour, the rational and sometimes harsh world can be kept stable as well as more tolerable [102]. Our study also showed that practical and emotional support are important coping resources for people with dementia. The findings are supported by a meta-synthesis of Eriksen et al. emphasising supportive interactions by family and friends as essential [23]. Supportive interactions enable people with dementia to prolong function and control in daily life, even though the areas of functioning gradually are becoming smaller. When symptoms increase and obstacles appear, our study gives the impression that most people with dementia fight the challenges. This is in line with a meta-synthesis conducted by Wolverson et al. [20] comprising the strengths that people can utilize in facing and fighting dementia, even leading to an experience of personal growth. Overall, fighting to keep going and overcome the daily struggles are signs of a problem-focused coping approach in people with dementia.

As the dementia condition progresses, and cognition as a personal coping resource declines, fighting the challenges will be more and more difficult. The person might experience that the ability to meet the situation changes and must therefore redefine what is important to him/her. Transformation in terms of new orientation and change of values (i.e. in relation to what is important in life), can be explained as response shift as described by Schwartz & Sprangers [103]. By «letting go» people with dementia can make a psychological shift from trying to change the unchangeable to acceptance and thereby deal with the decline [104]. People with dementia adapt by adjusting and compensating for their losses and challenges by selecting other goals or fewer domains in which to optimize their efforts and thereby sustain identity, function, and autonomy [105, 106]. In this process, emotion-focused strategies can help the person to adapt, reorient and regain balance. When balance is re-established, it may be relevant to use problem-focused strategies again.

Some of the studies refer to people with dementia expressing what they actually manage to do, despite their symptoms of decline. This can be seen as a particular way of understanding how values have been redefined. A recent meta synthesis showed that as the condition progresses, the lived space is narrowed for people with dementia. Førsund et al. [24] describe this process through the metaphor of the Russian “babushka doll,” which is a set of dolls of decreasing sizes that all fit inside one another one by one. Step- by- step, the person with dementia faces new challenges in how to cope.

People with dementia experience many challenges and a lot of stress. When life changes and the condition progresses, finding ways to cope is essential for making everyday life work and solve practical tasks. However, coping is also about finding ways to continue being oneself and to experience meaning and autonomy [11]. Thus, knowledge about coping resources and strategies in people with dementia is essential in dementia care. This insight is highly relevant to health care personnel whose role it is to help facilitate a supportive environment for the person with dementia. However, the information is also highly relevant for informal carers. They may support the person’s functioning by helping to facilitate and coordinate everyday living, but also by giving emotional and practical support. Though being able to do the things they still manage to do, perceptions of control continue to be a personal resource and may prevent experiences of helplessness and hopelessness, anxiety and depression [107].

Limitations and strengths

We performed a systematic meta-synthesis and a transparent description of the selection process for the included articles have been presented. However, we acknowledge that a complete overview is not attainable, despite our approaches. The value of both individual reviewers and the use of pairs of researchers to evaluate the studies should be accredited.

The CASP criteria for qualitative studies consist of ten questions in which we have chosen to the first nine. These nine criteria assess the quality of the structure and the objective elements of the articles. The last and 10th question has not been considered as this is a subjective appraisal of the value of the research and the particular article as a whole. The10th question can be seen as important for the external validity of single study as a whole. This said, in our review we used parts of the articles describing the experience of coping and we re-analyzed and synthesized the material. A broader description of context could have strengthened the review.

Only nine of 74 studies included in this meta-synthesis had a longitudinal design. Therefore, it was not possible to describe if - or how - coping strategies change over time due to progression of the dementia. Further research is recommended to use longitudinal design and explore to what degree the patients at different stages of the dementia trajectory, use either problem-focused and/or emotional- focused coping strategies.

Conclusions

People with dementia experience stress during the dementia trajectory and it is essential to find ways to cope in order to make everyday life work and to continue being oneself and experience meaning and autonomy. Thus, knowledge about coping resources and strategies in people with dementia is essential in dementia care. The insight is highly relevant to health care personnel and next of kin whose role it is to help facilitate a supportive environment for the person with dementia. This systematic meta-synthesis shows that people with dementia cope in different ways and use several parallel strategies in order to meet the challenges they face. The comprehensive meaning is understood as: Balancing the struggle to live with dementia.

Further research should reconsider using a longitudinal design and explore coping strategies in different stages of the dementia trajectory. It is also interesting to explore the influence of coping resources like humour and social and emotional support on coping strategies and capabilities of people with dementia. Last, but not least it is important to explore the success of coping strategies in order to support these strategies in people with dementia.

Availability of data and materials

All the articles included in this meta-synthesis are presented and accessible. The datasets used and analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

ASH:

Anne Sofie Helvik

CASP:

Critical appraisal skills programme

EKG:

Ellen Karine Grov

EWT:

Elisabeth Wiken Telenius

GHB:

Guro Hanevold Bjørkløf

SE:

Siren Eriksen

TIL:

Tanja Louise Ibsen

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Acknowledgements

We would like to thank university librarians Marit Gjone Sandsleth (University of South-east Norway) and Katarina Einarsen Enne and Vigdis Knutsen (Norwegian Advisory Unit on Aging and health) for providing essential help and advice for the computer-aided search.

Funding

The study, including systematic literature search, assessment of the quality of the studies, analysis, and interpretation of data; and writing the manuscript was all funded by the Norwegian Directorate of Health. However, the funding organization has not been involved in design, conducting the study or interpretation of results.

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Authors and Affiliations

  1. Norwegian National Advisory Unit on Ageing and Health (Ageing and Health), Postbox 2136, N-3103, Tønsberg, Norway

    Guro Hanevold Bjørkløf, Anne-Sofie Helvik, Tanja Louise Ibsen, Elisabeth Wiken Telenius & Siren Eriksen

  2. Department of Public Health and General Practice, Norwegian University of Science and Technology, Trondheim, Norway

    Anne-Sofie Helvik

  3. Department of Nursing and Health Promotion, Oslo Metropolitan University, Oslo, Norway

    Ellen Karine Grov

  4. VID Spesialized University, Faculty of Health Studies, Oslo, Norway

    Siren Eriksen

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  1. Guro Hanevold Bjørkløf
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Contributions

All authors, GHB, ASH, TLI, EWT, EKG and SE, critically reviewed and analyzed the data. All the authors explored approximately one third of the potential articles and conducted the quality assessment of the articles and extracted the meaning units. TLI and SE further condensed the meaning units. ASH and GHB organized the material and labelled the meaning units with codes in order to organize the material. All authors compared codes, identified similarities and differences, and structured the codes into subcategories and categories. All authors were included in summarizing the text as one overall latent theme. SE and GBH wrote the article in cooperation with the other authors. All authors have read and approved the final manuscript.

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Correspondence to Siren Eriksen.

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Ethical approval and consent to participate has been gathered from the researchers responsible for each single study included in this meta-synthesis. As this is a literature review, ethical approval and consent to participate was not applicable.

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Bjørkløf, G.H., Helvik, AS., Ibsen, T.L. et al. Balancing the struggle to live with dementia: a systematic meta-synthesis of coping. BMC Geriatr 19, 295 (2019). https://0-doi-org.brum.beds.ac.uk/10.1186/s12877-019-1306-9

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BMC Geriatrics

ISSN: 1471-2318

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