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Table 5 Results coping strategies: Overview of categories and subcategories with examples of condensed meaning units

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

Category

Keep going and holding on to life as usual

[19, 20, 27,28,29, 33,34,35, 37,38,39,40,41, 43, 47,48,49,50, 52, 54, 57, 58, 61, 62, 64,65,66, 68, 70,71,72,73,74,75,76, 78, 80,81,82, 85, 90, 91, 93, 94, 97, 98]

Adapting and adjusting to the demands from the situation

[19, 20, 27, 28, 30, 32, 35,36,37,38,39,40,41, 43,44,45,46,47,48,49,50, 52,53,54,55,56,57, 59,60,61,62,63,64, 68, 70, 72,73,74,75, 77,78,79,80,81,82,83, 85,86,87,88,89,90,91, 93, 94, 96,97,98]

Accepting the situation

[20, 33, 36,37,38, 41, 43, 47, 48, 50, 51, 53, 56, 57, 62, 64, 68,69,70, 72, 74, 75, 80,81,82, 85, 91, 92, 97]

Avoiding strategies

[27, 31, 38, 39, 42, 43, 47, 49, 57, 71, 72, 86, 89, 92, 94]

Sub-categories

- Preserving identity

- Normalising the situation

- Contributing to society

- Taking control and compensating

- Reframing identity.

- Position in life

-

Condensed meaning units

Preserving identity

Living life according to one’s core values [47].

Good memories of childhood and adult life confirms one’s position/identity [37].

Holding on to the existing self-concept [38].

Remembering and reminding herself of who she was, her strengths and characteristics [39].

Stories and memories from the past helped preserve the person they felt themselves to be [39].

Holding on to their roles in valuable relationships [40].

Holding on to identity makes it able to sustain and support a restricted self [47].

Narrating memories of past achievement as positive aspects of life [57].

Previous occupations were a manifest as examples of competence [98].

Using happy memories for comfort in the present situation [75].

Drawing on past roles and status as a reminder of who they were in the present, despite their new and “strange territory” [78].

Asserting strength, they once had, to manage this period of their life [78].

Making reference to working roles that were undertaken in the past [91].

Identifying personality and coping styles to meet the future [28].

Relating stories of taking initiative to preserve their faith and control their lives [85].

Having survived an aggressive cancer makes dementia “just another setback” [91].

Normalising the situation

Carry on as normal. Maintaining normality [34].

Keep telling myself that none of this is important [39].

Using a lot of energy to maintain a normal situation in daily life and preserving hope and willpower [85].

Not telling anybody about dementia, hoping to be seen as before [82].

Making extra efforts to behave according to the norms to avoid problems [73].

Normalization of memory loss decrease worry [50].

Normalizing the experience of dementia by comparing one-selves to others [70].

Explaining memory difficulties in term of old age [70].

Explaining giving up occupations as losing interest in them or being too old for them [98].

Contributing to society

Trying to be satisfied or finding ways of being useful [37].

Being a mother continued to be important [48].

Use remaining abilities and contribute to the household [48].

Appreciating the value of still being able to do things and function [48].

Being engaged in volunteer work to feel useful and make a contribution to society [72].

Being someone to others, and oneself in a social context, by giving homemade items [98].

Contributing to the family [61].

Finding purpose in life by crochet baby clothes to donate to hospitals [90].

Taking control and compensating

Mobilizing resources by accessing external services and friends and families [49].

Falling back on religion or life-values in times of stress as sources of comfort [47].

Doing life-long hobbies and habits to provide enjoyment and distraction from worries [52].

Using strategies to avoid mistakes due to memory loss [54].

Maintaining meaningful activities to cope with symptoms of dementia and the feeling of control [50].

Using old photographs and recounting stories to keep familiar ties and maintaining the experience in a socially coherent context [98].

Leisure activity counteract changes by keeping an active mind and give meaning in life [50].

Develop strategies to compensate for impairment [36].

Spending time and effort in planning and organising to meet difficulties better [36].

Writing notes to remember [40].

Using coping mechanisms trying to improve memory by cognitive exercise [47].

Using internet support groups to get knowledge of dementia and find ideas to manage changes [49].

Reduce household and external activities to manage stress [52].

Doing physical activity to delay deterioration [57].

Using external memory aid, structure of daily routine and medication to cope [70].

Using technology to provide “meaning and rescue” to each day [79].

Stopping certain occupations to avoid having accidents and misadventures [98].

Managing with assistance [57]

Escaping emptiness and boredom with TV, creating the feeling that there is someone else at home [89].

Accessing groups with other people with dementia to be proactive in managing dementia [83].

Being proactive to contact home health care nurse, because she knew help will be needed [88].

Going to the gym as an active step to develop a social attribute, so that others do not define him excessively by his dementia [91].

Maintaining meaningful activities to cope with symptoms of dementia and the feeling of control [50].

Important with familiarity with place to perform activities independently [35].

Holding on to autonomy, defend themselves against the concerns of their partner and others [40].

Having alternative plans if something doesn’t go as planned [49].

Be in control of own situation by deciding who to inform about the diagnosis [80].

Continuing daily routine helps staying in control of the situation and their identity [93].

Not accepting being talked over or about, but taking steps to educate others about dementia [61].

Among some, music was an active, enriching and embedded part of their everyday lives and it enhanced their sense wellbeing [87].

Involvement in music gave people with dementia a degree of empowerment and control over their own lives [87].

Reframing identity.

Redefining self [38].

Affirming one’s own identity and worth, by comparing with those who is less fortunate [37].

Comparing with others in same situation affirmed own approach to dementia [63].

Reoffering identity and place in the world, by deciding whether or not to accept help [48].

Making decisions help reaffirm a sense of self [48].

Taking responsibility for own personhood or relate closely to other members of the group of persons with dementia, in effort to bolster personhood [78].

Being a fighter [78].

Construct new self-narratives allowing to face the future with a certain equanimity [81].

Hope was balanced with the reality of a life well lived, and satisfaction of life, compared with those who was worse off [97].

Defining his role at a walking group to be a helper for others, whose needs are greater than his own [91].

Telling comprises a key element in the process of coming to terms with a diagnosis and co-constructing different sense of self [96].

Position in life

Highlighting things one can still do [33].

Maintaining a positive view of oneself [33].

Experiencing hope by having a positive focus on life and abilities to change [50].

Looking forward, don’t look backward [43].

Positive attitudes towards their present and future [50].

Focusing on the present day and positive things in life [80].

Believing that it is not what happens to you that matters, it’s how you think about it [72].

Live in the moment, enjoy life [50].

Referring to dementia as a problem, not the end of the world. Don’t think about it [91].

Positive attitude give hope and counteract losses [50].

Focusing on remaining abilities [63].

Shift focus from dementia to living well [62].

Remaining positive and focus on the possibilities in life, rather than the losses [80].

Not letting dementia take over my life [68].

Putting some effort into it, and put some things behind you [75].

Planning ahead helped to accept the future with a sense of hope [50].

Hoping for the future, regardless the prospect [37].

Develop ways of managing the thoughts about the future/ Finding meaning in the future [38].

An active resistance to change by refusing to adapt or refusing to accept help [49].

Keep telling myself that none of this is important [39].

Trying not to think about moving to nursing home [41].

Resistance to make changes because it would mean acceptance of the progression of the decease [49].

Resisting change to fight stigma and threats of identity [49].

Avoid thinking of the future [55].

Taking no initiative [89].

Push dementia away [27].

Linguistic strategies to create emotional distance [27]

Avoidance strategies like withdrawing and concealing difficulties [lead to isolation] [27].

Preventing themselves from thinking about the future [38].

Avoiding the influence of others who are further in the disease progression [72].

Holding on to the moment to protect themselves for the dreaded future [42].

Keeping occupied [71].

Being more active and do things as distraction [94].

Forget about the house and start a new life [in nursing home] [92].

Talking about others to get a distance between the dementia and oneself [47].