Living in the Moment: Empowered Caregiving in the United States for Family Members Living with Dementia

*Heather Howard
Phyllis And Harvey Sandler School Of Social Work, Florida Atlantic University, Florida, United States

*Corresponding Author:
Heather Howard
Phyllis And Harvey Sandler School Of Social Work, Florida Atlantic University, Florida, United States
Email:howardh@fau.edu

Published on: 2021-06-05

Abstract

Adults living with dementia require increasingly higher levels of supervision as the disease progresses, often resulting in emotional stress for families. Eight female caregivers in the U.S. were recruited. Using feminist Critical Discourse Analysis, we engaged these caregivers in focus groups, exploring gender and empowerment related to caregiving responsibilities. Four major themes emerged:
• Female caregivers’ perspectives on caregiving as a gender role,
• Female caregiver burden and emotional distress,
• Acceptance of the current situation and developing a new relationship, and
• Female caregivers’ suggestions regarding care of family member living with dementia.
It is important to consider how to assist caregiver’s empowerment and promote positive coping. In order to provide better services for female caregivers, health professionals practicing in older adult settings should offer support groups and support acceptance and adaptation to the new relationship with the person living with dementia.

Keywords

Dementia; Caregiving; Gender Empowerment; Social Support

Introduction

Dementia is a progressive neurodegenerative syndrome that causes irreversible decline in cognitive and intellectual function, with limitations in language, memory, executive function, orientation, and thinking processes [1]. In 2019, it is estimated that over 50 million people worldwide have dementia, with nearly 10 million new cases every year [2], and it is expected to increase 152 million by 2050 [3]. Alzheimer’s disease (AD) is the most common type of dementia in older adults [1]. Lewy body dementia (LBD), the second most common cause of dementia, is an umbrella term that includes dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD) [4].
Individuals living with dementia experience significant physical limitations, including motor deficits and gait, all of which may lead to progressive loss of independence in activities of daily living (ADL) [5]. In addition, dementia affects behavioral and psychological symptoms of dementia (BPSD) such as agitation, physical/verbal aggression [6,7], paranoia/delusion, depression [6], and apathy [8]. Although cognitive impairment is a major clinical symptom of dementia, an extensive body of literature notes that BPSD are more significant factors associated with caregiver burden [9,10].
Older adults with dementia require increasingly higher levels of supervision and personal care as the disease progresses. As dementia symptoms worsen, care required of family members can result in increased emotional stress and depression, health problems, and income and financial issues due to disruption in employment and paying for health care or other services [11-13]. Caregivers of dementia patients often provide physical assistance with basic ADL such as bathing, dressing, and taking medicine, as well as emotional support [8].

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