Table 4 Appropriateness: Categories and codes from the interviews with family caregivers and people with dementia.
Themes | Categories | Codes |
|---|---|---|
Experiences with discussing preferences | Discussing medical and non-medical issues | Choices within ACP depend on the present situation |
ACP focused on medical and non-medical issues | ||
ACP also focused on the here and now | ||
ACP mostly focused on health related issues | ||
Additional ACP outcomes | ACP stimulates to think about the future | |
ACP provides peace | ||
ACP provides clarity | ||
ACP increases trust in the healthcare provider | ||
ACP increases contact with the healthcare provider | ||
ACP increases the knowledge about dementia | ||
ACP makes sure their wishes are known | ||
ACP was not confronting | ||
ACP had not been useful | ||
ACP was confronting | ||
ACP was stressful | ||
Making timely shared decisions | Shared decision making | ACP should be decided upon together |
Healthcare professional should also listen to family caregiver | ||
FC could co-decide during ACP | ||
FC discussed ACP with person with dementia | ||
FC makes ACP decisions if necessary | ||
FC felt equal to the GP during ACP | ||
Engaging PWD is difficult because cognitive decline | ||
PWD keep aloof during ACP | ||
Making decisions for PWD is sometimes difficult | ||
SDM did not take place | ||
Taking responsibility for ACP decisions is difficult | ||
FC doubts if person with dementia can co-decide | ||
PWD’s insight in their situation is limited | ||
ACP is not feasible because of cognition | ||
Proactive behaviour | ACP has to be repeated twice a year | |
ACP has to be repeated annually | ||
FC had not thought about the future | ||
Proactive behaviour stimulates ACP | ||
GP has to take the initiative | ||
FC does not take the initiative | ||
Regular contact is important for ACP | ||
Discuss ACP when problems arise | ||
Has not thought about the future | ||
Does not want to think about the future | ||
FC does not contact the GP herself for ACP |