| Integrity (general) |
| 1. Frequency of contacts |
Caregiving affects the frequency of contacts or meetings between caregivers and their extended family. |
| 1.1. Increase |
The frequency of contacts with members of the extended family increases, mainly due to caregivers' need for help in delivering support to the care receiver (e.g., transportation to medical appointments) which is provided mostly by adult children, but also by siblings. |
| 1.2. Decrease |
The frequency of contacts (visits) with the multi-generational family (mostly children) decreases because caregivers find it difficult to leave the care receivers by themselves and the extended family finds it difficult to deal with the dementia. |
| 2. Difficulty in pursuing life projects |
Caregivers feel that the demands of the care giving role (full-time occupation) prevent them from achieving personal goals and plans for their later life (spending more time with grandchildren, visiting family members more often, visiting their country of origin or their birthplace, more time for leisure). |
| Transformation of family relationships |
| 3. Decrease in caregivers' reciprocity |
Caregiving has a double consequence for caregivers: they ask for/need more help from family members (particularly children), and they receive fewer requests for help from family members, who note their lack of availability. Caregivers feel they do not (cannot) maintain reciprocal relationships with family members. |
| 4. Emotional proximity |
Caregivers feel that caring influences their emotional proximity to the family. |
| 4.1. Increase |
Caregivers' emotional proximity to the family increases, because the care giving task improves the family bond (belonging, sharing, understanding, and mutual help). |
| 4.2. Decrease |
Caregivers describe a decrease in their emotional proximity to the family (weakened sense of belonging), mainly because they feel that their family is not there for them. |
| 5. Confrontation of loss and death |
Providing care confronts the caregivers with the loss (it is no longer the same person ) and the impending death of the care receiver (usually, a significant and close relationship); as a consequence the caregiver is confronted with his/her own death. |
| Resolution of past losses and conflicts |
| 6. Solving family conflicts |
Influence of care giving on conflict or resentment resolution within the family. |
| 6.1. Facilitate |
Caregivers feel that the challenges, demands, and meanings of the illness and care giving tasks facilitate family conflict resolution and generate feelings of cohesion and support, diminishing possible resentments. |
| 6.2. Difficult |
Caregivers consider that the illness and associated care needs make it more difficult to resolve family conflicts: the caregiver has fewer opportunities to visit the relatives with whom s/he has a conflict. Conflicts may even be exacerbated and resentments may arise, particularly when the caregiver feels misunderstood: s/he is spending money on care and the family does not understand (often associated with inheritance); the family does not understand the caregiver's lack of time. |
| Creation of meaning and legacy |
| 7. Family appreciation of caregiver's role |
The caregiver feels that the family appreciates his/her role and commitment to the relative with dementia. The caregiver feels proud and respected by the family. |
| 8. Dissatisfaction with grandparents' role |
The caregiver experiences feelings of dissatisfaction and self-devaluation because s/he has no time to be with grandchildren and to pass on the symbolic legacy. |
