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BMC Nurs. 2014 Dec 19;13(1):49. doi: 10.1186/s12912-014-0049-3. eCollection 2014.

Unmet support needs of early-onset dementia family caregivers: a mixed-design study.

Author information

1
Faculty of Nursing, Université de Montréal, 2375 Côte Ste-Catherine, Montréal, Quebec H3T 1A8 Canada ; Research Centre, Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary Road, Montreal, Quebec H3W 1W5 Canada.
2
Faculty of Nursing, Université de Montréal, 2375 Côte Ste-Catherine, Montréal, Quebec H3T 1A8 Canada ; Specialized Medicine Department, Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary Road, Montreal, Quebec H3W 1W5 Canada ; Memory Clinic, Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary Road, Montreal, Quebec H3W 1W5 Canada.
3
Research Centre, Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary Road, Montreal, Quebec H3W 1W5 Canada.
4
Psychopathology and Health Psychology, Université de Lille 3, Lille, France.
5
Centre National de référence pour les patients jeunes atteints de la maladie d'Alzheimer et maladies apparentées, Université de Lille, Lille, France.

Abstract

BACKGROUND:

Though advances in knowledge and diagnostics make it possible today to identify persons with early-onset dementia or a related cognitive disorder much sooner, little is known about the support needs of the family caregivers of these persons. The aim of this study was to document the unmet support needs of this specific group of caregivers. This knowledge is essential to open avenues for the development of innovative interventions and professional services tailored to their specific needs.

METHODS:

This study was conducted using a mixed research design. Participants were 32 family caregivers in their 50s recruited through memory clinics and Alzheimer Societies in Quebec (Canada). The Family Caregivers Support Agreement (FCSA) tool, based on a partnership approach between caregiver and assessor, was used to collect data in the course of a semi-structured interview, combined with open-ended questions.

RESULTS:

The unmet support needs reported by nearly 70% of the caregivers were primarily of a psycho-educational nature. Caregivers wished primarily: (1) to receive more information on available help and financial resources; (2) to have their relatives feel valued as persons and to offer them stimulating activities adjusted to their residual abilities; (3) to reduce stress stemming from their caregiver role assumed at an early age and to have the chance to enjoy more time for themselves; and (4) to receive help at the right time and for the help to be tailored to their situation of caregiver of a young person.

CONCLUSIONS:

Results show numerous unmet support needs, including some specific to this group of family caregivers. Use of the FCSA tool allowed accurately assessing the needs that emerged from mutual exchanges. Avenues for professional innovative interventions are proposed.

KEYWORDS:

Caregivers; Early-onset dementia; Partnership approach; Professional interventions; Unmet support needs

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