Unmet needs of family caregivers and primary healthcare practitioners of patients suffering from neurocognitive disorder

Clarisse Dibao, Jean Robert, Delphine Rubé, Sophie Rideau, Véronique Payen, Vincent Dumas, Guillaume Neff, Marie Lemaile, Jacques-Alexis Nkodo, Vincent Camus, Bertrand Fougère, Bruno Giraudeau, Dominique Beauchamp, Jean-Philippe Fouquet, Céline Dagot, Cécile Renoux

Keywords: Caregivers - dementia - primary care - needs

Background:

Interventions to reduce caregiver burden of patients living with neurocognitive disorder are slightly effective because they do not fit caregiver’s needs.

Research questions:

To describe caregiver’s needs to reduce their burden, and to identify healthcare professionals’ needs to increase the impact of a future tailored intervention on caregiver’s identified unmet needs in primary care.

Method:

Two-phases convergent design. We used a sequential mixed method study composed by a cross-sectional study (phase 1) and a qualitative study (phase 2) to collect needs of caregivers and healthcare professionals from an urban and a rural territory of primary healthcare in France. Both qualitative and quantitative results were then reported theme-by-theme using a weaving approach to highlight the different parts of a tailored and complex intervention adapted to the identified needs.

Results:

199 general practitioners (GPS) and 67 caregivers participated in the phase 1 quantitative study. 10 caregivers from the urban territory of care and 12 caregivers from the rural territory of care participated in the interviews, when 9 healthcare professionals participated in the focus groups. Results using the weaving approach highlighted the main caregivers’ needs, reported in both quantitative and qualitative data: early diagnosis; information and formation about the evolution of the Alzheimer’s disease and what the caregiver has to expect; coordinated aids; and psychological support.

Conclusions:

A complex and tailored intervention can be developed based on these caregivers and health professionals’ identified unmet needs.

Points for discussion:

What will be the next step of this study ?

How do cultural differences impact results?