Table 4

CMO configurations with supporting evidence for the ‘caregiver’s experience’

Context (C)-Mechanism (M)-Outcome(O)Example of supporting evidence from the literature
CMO: When a person with dementia dies (C), the void in reciprocity experienced during the care giving relationship (M) and a sense of duty (M) can drive members of the caring network to transfer their skills to the community (O) Reciprocity: yet many aspects of my experience were positive. My father and I had conversations about his memories of his older relatives that I doubt we would have had otherwise. Sharing the ups and downs of caregiving with my sister also brought us closer together. It was the first time that we had discussed our values about caregiving (despite having witnessed our mother’s experience), money, and ultimately, end-of-life care…’ 96
Duty : ‘As a son, taking care of my parents is my responsibility. Sometimes, my sisters come back home to care for my father, but they have already married out [of the family). They are guests. It's not their responsibility. I appreciate their assistance though. However, my brother and I have the ultimate responsibility to take care of our parents.110
‘I just took it as that was part of my life goal, to take care of them… It’s stressful, but sometimes it’s rewarding.’ 95
‘…if you have to have something bad happen to you, to be able to turn it into something positive that helps other people, it’s a good thing to do… I like to say when I go out to speak that I have a lot of passions, that I have passions for gardening and for hiking and for quilting… I chose those passions, and then I have a passion that chose me, and that’s what Alzheimer’s is… I think there are ways to give of yourself that sort of replace that caregiving role… working with the Alzheimer’s Association and that work that I do- I think that’s filled the void.’ 95
CMO: Where relationships with a caring network become strained (C), the exchange of knowledge (M) and trusting relationships (M) generated positivity and rewarding aspects to the care experience (O) Strain: ‘Initially life seemed unbearable. My mother was incontinent, hallucinating, and disoriented. At one point she stayed awake for 40 hours seeing people, places, and things that weren’t there. We were exhausted. But in time, she showed signs of improvement.’
Knowledge exchange: ‘I think just their reassurance…there is nothing physically they can do…they just reassure you…. That you are doing the right thing, more than anything, because sometimes you do doubt yourself’ 61
Trust : ‘External support resources from the community or charitable organisations were a key feature for some. Specifically, reliance on neighbours or being members of a close community gave reassurance of their relative’s safety when they were not present70
Rewarding aspects to care: ‘When my mother died from a fall, I reflected on the satisfaction and peace I had not anticipated I would feel. I knew what it was to ‘give back’ to my mother. It seems incredible that caregiving can be so satisfying. I look into her bedroom now and I can feel her presence…and I am thankful for the final gift she gave me.94
CMO: Where relationships with a caring network become strained (C), a sense of guilt (M), failure (M) and uncertainty (M) in addition to the paternalistic actions of professional care networks (M) can cause the caregiving experience to become overwhelming (O) Strained relationships : ‘It’s a different thing when Mum (person with dementia) was living with us. He (participant’s husband) just didn’t handle things, and I was between the devil and the deep. I didn’t want to [move to a care home)-Mum needed the care. I felt that she wasn’t ready to go into a nursing home at that stage, and yes, it was awful. It affected me very badly’ 71
Guilt : ‘The doctor said my mom could not live alone. You know, I love my mom, but she could not come and live with us. It would have disrupted my whole family. I know it is terrible to call your mother a disruption. What a guilt trip.’ 81
Paternalism : ‘…healthcare professionals unfamiliar with the family and the resident’s individual wishes were also noted to cause unnecessary anxiety, again resulting in reluctance of further contact.’ 70
Uncertainty : ‘…thus, critical issues of personhood, identity, agency, and control were embedded in our moms’ experiences and reflected in our experiences as families as we struggled to ‘do what was right.’ 49
Overwhelming : ‘I had no one to look after mum, so I couldn’t go to work, and I do believe that that impacted and I do believe that that’s one of the reasons that they fired me. Because I couldn’t attend work because I had to look after mum’ 62
CMO: Where powerful structures of care become involved (C), feelings of failure (M) and a loss of autonomy (or paternalism from healthcare professionals) (M) can lead to a care experience that feels overwhelming (O)‘Hospitalisation of the person with dementia was also described as a challenging time. Carers may have taken responsibility for all of the caring, believed they knew the person and their needs most intimately and taken responsibility for decision-making; however, when the person with dementia is admitted to hospital, the carer is usually no longer primarily responsible for these things and he/she can experience an acute loss of control. In addition, vulnerable family caregivers can feel disempowered by the health care system, especially when they are not recognised as the expert in the care of their relative and not appropriately included in decision-making’ 71