Effects of different advance care planning approaches in dementia

In dementia, inevitable cognitive and physical decline imply that control is typically lost. Advance care planning (ACP) may increase control over care and treatment at the end of life. Since it is advised to start ACP early in case of dementia, general practitioners are well positioned to initiate ACP. However, ACP is often not implemented in general practice, and it is unknown what the effective or ineffective elements of or approach to ACP are for persons with dementia and their family caregivers.

There are different approaches to ACP. In this study we aim to assess the effects of two approaches to ACP in dementia. One approach focuses on (medical) advance treatment orders in detail; and the other approach focuses on assessing preferences and global aims to guide future care, acceptance, and coping with the disease. In a cluster-randomized controlled trial with both explanatory and pragmatic elements, we examine effects of these two approaches compared with usual care on the wellbeing of people with dementia. We also assess effects on decisional conflict, self-efficacy to interact with physicians, and family caregiver perception of physician-family caregiver communication. In addition, we aim to determine if these effects are moderated by the readiness of the person with dementia or the family caregiver to engage in the particular ACP intervention.

We plan to recruit 45 general practitioners from different general practices who will include 279 persons with dementia and their family caregivers. Fifteen general practitioners will receive interactive training and supportive materials for physician, family and person with dementia for one approach, and 15 other general practitioners will receive a similarly structured training and supportive materials to apply the other approach. The practitioners randomized to the control condition will not receive training and provide usual care. General practitioners are invited to bring their practice nurse to the training and involve them in delivering the intervention. For the baseline assessment, the researchers will interview the persons with dementia. Their family caregivers will complete questionnaires at baseline and afterwards, semi-annually. The persons with dementia will thus be followed until death or as long as possible. After death, their family caregiver will be asked to participate in an interview. We will describe and explore effects on family caregiver’s decision regret regarding health care decisions at the end of life, family caregiver’s satisfaction with care (evaluation of quality of care) at the end of life and comfort in dying of the person with dementia.

We hypothesize that ACP increases the wellbeing of persons with dementia somewhat, but that the effect is larger when the intervention matches the physician’s estimated readiness of the person with dementia or family caregiver to engage in the particular ACP intervention.

We hypothesize that ACP decreases family caregiver’s decisional conflict, increases self-efficacy to interact with physicians, and increases favorable family caregiver perception of physician-family caregiver communication. We also hypothesize that these effects are larger when the intervention matches the physician’s estimated readiness of the family caregiver to engage in the particular ACP intervention.

We will explore whether demographics, dementia severity, family caregiver burden, symptoms of depression, personality (coping strategy, locus of control), life view (illness perception, death anxiety, religion), and ACP-related items (stage of change concerning ACP, and matching physician-person with dementia-family preferred approaches to ACP) are associated with the physician’s estimated readiness of the person with dementia and the family caregiver for the particular ACP intervention. We will also explore if any of these factors moderates effects of the intervention.

Baseline assessment pre-intervention and follow-up assessments semi-annually.

Intervention type 1 focuses on setting (medical) advance treatment orders in detail with persons with dementia and their family caregivers during the process of ACP.

Intervention type 2 focuses on assessing preferences and global aims to guide future care, acceptance, and coping with the disease with persons with dementia and their family caregivers during the process of ACP.

Both interventions include multiple interactive training sessions for general practitioners and, if preferred, also their practice nurse; forms to document results of ACP conversations; and prompting of persons with dementia and their family caregiver by providing a question prompt list to consider personal questions for the GP on a future with dementia. The contents of training, form and question prompt list match the focus of the respective intervention.