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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].