Abstract
BackgroundPersons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers’ met and unmet needs and to describe their experience.MethodsThis is a sequential mixed methods explanatory design: Phase 1: cross-sectional study to describe the met and unmet health and social care needs of community-dwelling persons living with dementia using Camberwell Assessment of Need of the Elderly and Carers’ Assessment for Dementia tools. Phase 2: qualitative descriptive study to explore and understand the experiences of persons living with dementia and caregivers with the use of social and healthcare services, using semi-structured interviews. Data from phase 1 was analyzed with descriptive statistics, and from phase 2, with inductive thematic analysis. Results from phases 1 and 2 were compared, contrasted and interpreted together.ResultsThe mean total number of needs reported by the patients was 5.03 (4.48 and 0.55 met and unmet needs, respectively). Caregivers had 0.52 met needs (3.16 unmet needs). The main needs for both were memory, physical health, eyesight/hearing/communication, medication, looking after home, money/budgeting. Three categories were mentioned by the participants: Persons living with dementia and caregiver’s attitude towards memory decline, their perception of community health services and of the family medicine practice.ConclusionsOur study confirms the findings of other studies on the most common unmet needs of the patients and caregivers that are met partially or not at all. In addition, the participants were satisfied with access to care, and medical services in primary practices, being confident in their family. Our results indicate persons living with dementia and their caregivers need a contact person, a clear explanation of their dementia diagnosis, a care plan, written information on available services, and support for the caregivers.
Highlights
Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians
Needs of the patients living with dementia and their caregivers Persons living with dementia (PWD) have various needs and expectations, some of them are not yet fully met [4]
The majority of PWD and caregivers had completed at least high school, and most of the participants were retired
Summary
Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The objective of this study is to identify persons living with dementia and caregivers’ met and unmet needs and to describe their experience. Needs of the patients living with dementia and their caregivers Persons living with dementia (PWD) have various needs and expectations, some of them are not yet fully met (e.g., early diagnosis of dementia) [4]. Caregivers are still the main source of help to this population and often report physical and psychological burden [5]. They are involved in the day-to-day care in addition to coordinating a variety of health services. One of the recent studies showed that more than 70% of caregivers had at least one unmet need that is underestimated by the healthcare system [6, 7]
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