Main positive and negative aspects and related factors influencing caregivers’ role (N=81)
| Studies (n) | Example of studies | |
| Positive appraisal about caregiving | 18 | |
| Personal aspects experienced by caregivers | ||
| Personal accomplishment and gratification/strengthening of the relationship | 10 | Harris34 |
| Be able to support family and return the favour | 9 | van Wezel24 |
| Be able to do meaningful activities together | 8 | Harmer and Orrel, 200894 |
| Ensure the dignity of the relative | 7 | Poole et al97 |
| Factors that contribute to positive appraisal | ||
| Good medical counselling and formal care support | ||
| Useful instructions or information about dementia | 8 | Boots et al96 |
| Good home care/day care services and homelike facilities | 5 | Popham and Orrell28 |
| Access to good medical support for caregiver and the person with dementia | 5 | Karlin et al36 |
| Early diagnosis/relief after the diagnosis | 3 | Connell et al33 |
| Family/friends support | ||
| Can count on old friends | 5 | Harris34 |
| Support groups | 5 | Ivey et al98 |
| Having family support | 3 | Lampley-Dallas et al99 |
| Having free time for themselves | 3 | Ivey et al98 |
| Negative appraisal about caregiving | 76 | |
| Emotional and social aspects experienced by caregivers | ||
| Stress, loss, grieving, guilt and sad feelings | 48 | Peel and Harding47 |
| Feeling alone and desperate for help | 23 | Karlin et al36 |
| Exaggerated precautions with vigilance and safety issues | 12 | Phillipson and Jones100 |
| Problems with acceptance and dealing with the diagnosis | 9 | Aminzadeh et al101 |
| Problems related to food issues | 9 | Taşc et al38 |
| Obligation to be a caregiver for lack of alternatives | 9 | Forbes et al40 |
| Uncertainty/fear about the future and loss of hope | 8 | Ivey et al98 |
| Social isolation | 5 | Lampley-Dallas et al99 |
| Not being recognised by the relative | 5 | Wezel et al24 |
| Loss of old friendships | 2 | Lethin et al52 |
| Factors that contribute to negative appraisal | ||
| Inappropriate medical and formal care support | ||
| Constant changes in formal care teams and prolonged process of diagnosis | 9 | Bunn et al45 |
| Decision-making process without medical counselling | 7 | Jennings et al59 |
| Bad home care service/long waiting list in formal care | 7 | Morgan et al53 |
| Weak support groups | 4 | Morgan et al53 |
| Weak explanation of disease at the time of diagnosis | 3 | Connell et al33 |
| Illness progression | ||
| Daily progression | 33 | Lian et al102 |
| Behaviour problems | 17 | Lian et al102 |
| Sleeping problems and night agitation | 11 | Jamieson et al37 |
| Patient comorbidities | 6 | Oliveira et al30 |
| Bedridden relative | 4 | Elliott et al103 |
| Patient dependence on activities of daily living | 50 | Taşc et al38 |
| Cost of illness | ||
| High costs of formal care/medication and assistance | 28 | Zabalegui et al66 |
| Have to quit job or reduce hours | 9 | Lampley-Dallas et al99 |