Background: The increasing prevalence of Alzheimer's disease and other forms of dementia
causes new challenges in primary care. Indeed, primary care providers point to a need for
more training to care for this population, especially seniors presenting behavioural and
psychological symptoms of dementia. They also find the inter-professional nature of care, and
the need to communicate with community services and families, very challenging. Moreover,
patients living with dementia and their caregivers consistently report their need for more
information about dementia. Therefore, in a recent survey, the investigators sought five
difficult decisions that patients living with dementia and their informal caregivers often
face in primary care settings. In the current study, they propose to tailor and evaluate an
e-learning professional training program on shared decision making, comprising evidence
summaries on the health options to consider before making these five difficult decisions.
This tailored training program is expected to improve shared decision making between
clinicians and patients with dementia and their caregivers, and in turn improve patient and
caregiver empowerment in relation to their own health care.
Methods: In two phases, the aims of this study are to (1) design and tailor the intervention,
and (2) implement and evaluate it. In the first phase, theory and user-centred design will be
used to tailor a multifaceted intervention comprising a distance professional training
program on shared decision making, and five shared decision-making tools dealing with
difficult decisions often faced by seniors with dementia and their caregivers. Each tool will
be designed in two versions, one for clinicians, and one for patients/caregivers. Forty-nine
clinicians and 27 patients/caregivers will be invited to participate to three cycles of
design-evaluation-feedback of each intervention components. Besides think-aloud and interview
approaches, they will also complete questionnaires to identify the factors most likely to
influence their adoption of shared decision making after exposure to the intervention.
Thereafter, the intervention will be modified by adding/enhancing behaviour-change techniques
targeting these factors. In the second phase, the effectiveness of this tailored intervention
will be evaluated before/after implementation, in a two-armed, clustered randomized trial
with a three-month follow-up. A convenience sample of primary care clinics and home care
services will be enrolled in the province of Quebec (Canada), and health care providers who
practice there will be recruited (mostly family physicians, nurses, and social workers). We
will record participants' access to training component, and conduct telephone interviews with
a purposeful sample of participants, half of whom completed training and the other half whom
did not. The participants will also complete a survey before and after training, to assess
their knowledge, and intention to adopt shared decision making. Three researchers will
conduct a thematic qualitative analysis of the interviews, as per the theory of planned
behaviour. We performed bivariate analyses with the survey data.
Discussion: The results of this study will allow modifying the training program to improve
participation rates and, ultimately, uptake of meaningful sjared decision making with
patients living with dementia.
