Table 2.
One hundred twenty-one outcomes extracted from qualitative data collection, across literature and their final status
| Source | No. | Initial grouping | Outcome | Final status |
|---|---|---|---|---|
| Qualitative data collection (1–79) | Living with dementia | |||
| 1 | Acceptance of dementia | In long-list | ||
| 2 | Access to meaningful activity and stimulation | In long-list | ||
| 3 | Access to social contact and company | In long-list | ||
| 4 | Being personally clean and comfortable | In long-list | ||
| 5 | Choice in living arrangements | Removed (not relevant) | ||
| 6 | Feeling financially secure | In long-list | ||
| 7 | Feeling safe and secure | In long-list | ||
| 8 | Having a sense of social integration | In long-list | ||
| 9 | Living in a clean and comfortable environment | Merged (4) | ||
| 10 | Maintaining a sense of self | In long-list | ||
| 11 | Maintaining a sense of who you are, role/occupation | In long-list | ||
| 12 | Self-esteem | In long-list | ||
| 13 | Having a sense of purpose | Merged (11) | ||
| 14 | Religion/spirituality | Merged (2) | ||
| 15 | Basic Activities - being able to carry out basic self-care and basic tasks | In long-list | ||
| 16 | Instrumental/more complex activities | In long-list | ||
| Maintaining cognition | ||||
| 17 | Word finding/language difficulties | In long-list | ||
| 18 | Difficulties identifying/counting money/overspending | In long-list | ||
| 19 | Deterioration (fears it will ‘spread’) | In long-list | ||
| 20 | Memory | In long-list as 2 items (short & long term memory) | ||
| 21 | Visuospatial abilities | In long-list | ||
| 22 | Confusion/getting lost | In long-list | ||
| 23 | Learning new things | In long-list | ||
| Physical functioning | ||||
| 24 | Physical function | In long-list | ||
| 25 | Maintaining physical function | Merged (27) | ||
| 26 | Falls | In long-list | ||
| 27 | Keeping physically active | In long-list | ||
| 28 | Balance | In long-list | ||
| 29 | Co-morbidity | In long-list | ||
| 30 | Mobility | In long-list | ||
| Maintaining relationships | ||||
| 31 | Importance of relationships with family and friends | In long-list | ||
| 32 | Loss of relationships | Merged (31) | ||
| 33 | Reaction of family and friends to diagnosis | In long-list | ||
| Maximising autonomy or independence | ||||
| 34 | Maintaining independence | Became a domain - Independence | ||
| 35 | Being able to make choices/being involved in choices | Became a domain - Independence | ||
| 36 | Maximising confidence | Merged (12) | ||
| 37 | Minimising loneliness or isolation | In long-list | ||
| Living with others and the environment | ||||
| 38 | Access to appropriate services | Removed (Intermediate/service/process outcome) | ||
| 39 | Information, i.e. having information about available services/support | Removed (Intermediate/service/process outcome) | ||
| 40 | Being able to relate to other service users | Merged (3) | ||
| 41 | Being treated as an individual | Removed (Intermediate/service/process outcome) | ||
| 42 | Communication | In long-list | ||
| 43 | Continuity of hobbies and care | Merged (2) | ||
| 44 | Feeling valued and respected by others | In long-list | ||
| 45 | Having a safe and secure home | Merged (7) | ||
| 46 | Having a safe and secure neighbourhood | In long-list | ||
| 47 | Having a say in services | Merged (41) | ||
| 48 | Neighbourhood and public awareness of dementia | Became a domain - Friendly Neighbourhood & Home | ||
| 49 | Service driven provision | Removed (process outcome) | ||
| Psychological and behavioural symptoms of dementia (BPSD) | ||||
| Behaviour | ||||
| 50 | Frustration | In long-list | ||
| 51 | Sleeping | In long-list | ||
| 52 | Denial | Merged (1) | ||
| 53 | Aggression/abusive behaviour | In long-list | ||
| 54 | Agitation | In long-list | ||
| 55 | Apathy | In long-list | ||
| 56 | Suspicion/paranoia | In long-list | ||
| 57 | Changes in personality | Removed (present across BPSD outcomes) | ||
| 58 | Eating | In long-list | ||
| 59 | Wandering | In long-list | ||
| 60 | Inappropriate speech/disinhibition | In long-list | ||
| 61 | Repeated questioning | In long-list | ||
| 62 | Hallucinations/delusions | In long-list | ||
| Mood | ||||
| 63 | Anxiety | In long-list | ||
| 64 | Embarrassment | In long-list | ||
| 65 | Happy | In long-list | ||
| 66 | Depression | In long-list | ||
| The experience of caring for a person with dementia | ||||
| 67 | The effect of caregiving on the carer | Removed (not relevant - focus not on person living with dementia) | ||
| 68 | Carer reaction | Removed (not relevant - focus not on person living with dementia) | ||
| Others | ||||
| 69 | Quality of life | Became a domain - Quality of Life | ||
| 70 | Lived experience | Removed (present across many outcomes) | ||
| 71 | Health and co-morbidity | In long-list | ||
| 72 | End of life planning | Removed (Intermediate/service/process outcome) | ||
| 73 | Cultural differences | Merged (41) | ||
| 74 | Cost effectiveness of interventions | Removed (Intermediate/service/process outcome) | ||
| 75 | Managing dementia | Became a domain - ‘Self-Managing Dementia Symptoms’ | ||
| 76 | Dementia progression | Merged (19) | ||
| 77 | Medical events/falls | Merged (26) | ||
| 78 | Maintaining everyday activities | Merged (2, 15, 16) | ||
| 79 | Support | Merged (2, 3, 31, 38) | ||
| Additional outcomes from literature (80–107) | 80 | Adverse events | Removed (not relevant) | |
| 81 | Aberrant behaviours other than wandering | Merged (59) | ||
| 82 | Secretiveness | In long-list | ||
| 83 | Hopelessness | Merged (66) | ||
| 84 | Subjective memory/cognitive problems | Merged (17–23) | ||
| 85 | General cognition | Became a domain - ‘Self-Managing Dementia Symptoms’ | ||
| 86 | Alertness | In long-list | ||
| 87 | Attachment | Merged (31–32) | ||
| 88 | Personal cost to person with dementia/family | Removed (process outcome/cost) | ||
| 89 | Mortality | Removed (not relevant) | ||
| 90 | Time to significant event | Removed (Intermediate/service/process outcome) | ||
| 91 | Physical environment | Merged (part of ‘Friendly Neighbourhoods & Home’ domain) | ||
| 92 | Medications (Type; Access; management) | Merged (15, 16) | ||
| 93 | Medical health markers (cardiac rhythm, brain activation, brain volume, blood pressure) | Merged (29, 71) | ||
| 94 | Number of contacts with health and social care professionals | Removed (Intermediate/service/process outcome) | ||
| 95 | Health Behaviours | Removed (Intermediate/service/process outcome) | ||
| 96 | Weight (also BMI) | Merged (93) | ||
| 97 | Sleep | In long-list | ||
| 98 | Quality of care process outcomes | Removed (Intermediate/service/process outcome) | ||
| 99 | Health related quality of life | Merged (Quality of Life domain and present across outcomes) | ||
| 100 | Enjoyment | Merged (present across ‘Friendly Neighbourhoods & Home’ domain) | ||
| 101 | Self-efficacy | Merged (12) | ||
| 102 | Wellbeing | Removed (present across included outcomes) | ||
| 103 | Use of healthcare | Removed (cost related, not individual outcome) | ||
| 104 | Use of social resources | Removed (cost related, not individual outcome) | ||
| 105 | Use of other organisations | Removed (cost related, not individual outcome) | ||
| 106 | Unmet needs general | Removed (not a single outcome) | ||
| 107 | Satisfaction with/acceptability of intervention | Removed (Intermediate/service/process outcome) | ||
| Additional outcomes from policy (108–120) | 108 | Timely diagnosis | Removed (Intermediate/service/process outcome) | |
| 109 | Stigma or discrimination | Merged (44) | ||
| 110 | Sense of humour | Merged (114) | ||
| 111 | Research | Removed (not an outcome) | ||
| 112 | Reaction of others or wider community | Merged (48) | ||
| 113 | Impact of diagnosis | Merged (present across all included outcomes) | ||
| 114 | Having a laugh | In long-list | ||
| 115 | Getting out of the house | Merged (2, 34, 36) | ||
| 116 | Feeling like a burden | In long-list | ||
| 117 | Faith religion or spirituality | Merged (2) | ||
| 118 | Enjoyment | Merged (100) | ||
| 119 | Empower or protection of rights | Removed (Intermediate/service/process outcome) | ||
| 120 | Dementia friendly environments | Merged (48) | ||
| Additional outcomes from key reviews and qualitative papers | 121 | Missing something | Merged (2, 78) | |
| Added during team workshops | 122 | Vision and hearing | In long-list |