Table 2

Main positive and negative aspects and related factors influencing caregivers’ role (N=81)

Studies (n)Example of studies
Positive appraisal about caregiving18
 Personal aspects experienced by caregivers
  Personal accomplishment and gratification/strengthening of the relationship10Harris34
  Be able to support family and return the favour9van Wezel24
  Be able to do meaningful activities together8Harmer and Orrel, 200894
  Ensure the dignity of the relative7Poole et al97
Factors that contribute to positive appraisal
 Good medical counselling and formal care support
  Useful instructions or information about dementia8Boots et al96
  Good home care/day care services and homelike facilities5Popham and Orrell28
  Access to good medical support for caregiver and the person with dementia5Karlin et al36
  Early diagnosis/relief after the diagnosis3Connell et al33
 Family/friends support
  Can count on old friends5Harris34
  Support groups5Ivey et al98
  Having family support3Lampley-Dallas et al99
  Having free time for themselves3Ivey et al98
Negative appraisal about caregiving76
 Emotional and social aspects experienced by caregivers
  Stress, loss, grieving, guilt and sad feelings48Peel and Harding47
  Feeling alone and desperate for help23Karlin et al36
  Exaggerated precautions with vigilance and safety issues12Phillipson and Jones100
  Problems with acceptance and dealing with the diagnosis9Aminzadeh et al101
  Problems related to food issues9Taşc et al38
  Obligation to be a caregiver for lack of alternatives9Forbes et al40
  Uncertainty/fear about the future and loss of hope8Ivey et al98
  Social isolation5Lampley-Dallas et al99
  Not being recognised by the relative5Wezel et al24
  Loss of old friendships2Lethin et al52
Factors that contribute to negative appraisal
 Inappropriate medical and formal care support
  Constant changes in formal care teams and prolonged process of diagnosis9Bunn et al45
  Decision-making process without medical counselling7Jennings et al59
  Bad home care service/long waiting list in formal care7Morgan et al53
  Weak support groups4Morgan et al53
  Weak explanation of disease at the time of diagnosis3Connell et al33
 Illness progression
  Daily progression33Lian et al102
  Behaviour problems17Lian et al102
  Sleeping problems and night agitation11Jamieson et al37
  Patient comorbidities6Oliveira et al30
  Bedridden relative4Elliott et al103
  Patient dependence on activities of daily living50Taşc et al38
 Cost of illness
  High costs of formal care/medication and assistance28Zabalegui et al66
  Have to quit job or reduce hours9Lampley-Dallas et al99