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Care in dementia: Informal caregiver motivations

Introduction: The progression of dementia and the clinical situation severity can determine the intensity and the frequency of care. Informal caregivers (IC) often experience overload and motional stress by caring for a person with dementia (PWD), and this contributes to negative consequences on psychosocial health and increased risk of mortality. Objectives: The aim of this study is to describe the profile and motivations of informal caregivers of people with dementia. Methods: We developed a descriptive-exploratory study with a mixed approach. The research scenario was the Health Centre Groups (ACES) of the Northern Zone of Portugal and its respective Family Health Units (USF) and Community Care Unit (UCC). Results: From the sample studied, it was observed that ICs are predominantly female (72.2%), with ages varying between 34 and 88 years (x = 61.43; ± 11.75). The relationship with PWD is mainly a parent son relationship (46.7%) followed by the spouse (40%) with lower expression for the siblings (2.2%). The main motivations that led family members to become caregivers were categorized into four themes: i) Emotional reasons (love, affection, marriage, commitment); ii) Duty and responsibility; iii) Proximity and availability; and iv) Feeling of pain (charity). Regarding the main motivations for caregivers, we found a greater expressiveness for both the spouses (69.5%) and the sons or daughters (58.5%) for emotional reasons. Conclusions: Therefore, even if caregivers feel motivated to take care of their family member, care strategies should be developed to help the informal caregivers to minimize stress, overload, depression and anxiety arising from this task, maximizing coping strategies and empowerment. As health care responsibilities and burdens continue to be transferred to the family and other caregivers, there is an urgent need for family-friendly policies, practices and interventions.

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Oxford university press
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European Journal of Public Health
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