Impact of dementia on informal care: a systematic review of family caregivers’ perceptions

Lindeza, Patrícia; Rodrigues, Mário José da Costa; Costa, João; Guerreiro, Manuela; Rosa, Mário Miguel

doi:10.1136/bmjspcare-2020-002242

Cited by 160 publications

(172 citation statements)

References 97 publications

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“…FTD is marked by a gradual onset (Johannessen et al, 2017). Often family members may therefore misinterpret subtle symptoms as variations of a person's 6 NEEDS OF CARERS OF PEOPLE WITH FTD Recent reviews of the literature have reported that being aninformal carer for a person with dementia can lead to physical and psychological problems, social isolation and financial difficulties (Brodaty & Donkin, 2009;Chiao et al, 2015;Lindeza et al, 2020;Lindt et al, 2020). These areas of difficulty are often combined in the measurement of carer 'burden', which refers to the physical, financial and emotional strain experienced by a carer of a person with illness (Dunkin & Anderson-Hanley, 1998).…”

Section: Introductionmentioning

confidence: 99%

Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review

et al. 2021

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Introduction Frontotemporal dementia (FTD) is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of ‘non-typical’ dementia symptoms. Informal carers of people with FTD experience greater levels of overall burden than carers of people with other forms of dementia. The aim of this systematic review was to describe the subjective experience of being an informal carer of a person with FTD and to identify the specific needs, coping strategies and helpful support resources of this carer population. Methods Four electronic databases were used to search for published literature presenting experiences of carers of people with FTD between January 2003 and July 2019. Search strategy followed PRISMA guidelines. Findings were analysed using framework analysis, employing five stages of analysis to develop a coding index and thematic framework that included key aspects of the carer experience, which were grouped into themes and presented in a narrative format. Results 1213 articles were identified in total. Twelve studies were included in the final synthesis of the review. Six themes were identified: ‘Challenging road to and receipt of diagnosis’, ‘relationship change and loss’, ‘challenging experiences in caring’, ‘positive experiences and resilience’, ‘coping’ and ‘support needs’. Discussion Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. Further research should explore relationship changes and loss amongst carers to inform approaches for carer support. In conclusion, the lack of knowledge and unique needs of carers highlight the importance of public awareness campaigns and healthcare professional education to support carers with FTD symptom impact.

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Section: Introductionmentioning

confidence: 99%

Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review

et al. 2021

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“…Currently, there is a worldwide lack of knowledge, awareness, and an indepth understanding of dementia impact on caregiver's daily life. Results from a recent review have shown that the negative aspects involved in informal caregiving prevail over positive, to caregivers, and that the high complexity of the experience of caring can only be reduced with multidirectional approach addressing these community's needs and improving the quality of life of the person with dementia and their family caregivers [27].…”

Section: Introductionmentioning

confidence: 99%

Facing Costs With Dementia: Daily Lives Perspectives From Informal Caregivers

Lindeza¹,

Virgolino²,

Santos³

et al. 2020

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Background: Caregivers of people with dementia report stress, depression and economic burden compared to other caregivers. This study aimed to characterize the daily lives experiences of dementia patients’ informal caregivers and to uncover day-to-day sources of expenses related with dementia care. Research design and methods: Qualitative observational study, following a grounded theory approach. Data were collected with semi-structured focus groups with informal caregivers of persons with dementia. Discussed themes included changes in daily lives, formal care services utilization, quality of life and costs. Content analysis was conducted with Charmaz’s line-by-line open coding procedure.Results: Overall, 14 relatives of persons with dementia were included. Most of participants were female (12) and eight of them were daughters of the patient. Ages ranged from 39 to 84 years and eight had a high degree of education. Four of the caregivers were professionally active and the range of years assuming the role of main informal caregiver varied from two to 15 years. Conclusions: Findings provide insight into the daily life experience of caring for a person with dementia, while revealing the impact on the quality of life of caregivers. The individual sociodemographic and psychosocial characteristics, together with a lack of adapted formal care services and low financial aid leaded to a high burden experience for these caregivers. A multidirectional approach addressing caregivers needs, while improving formal care services and creating social and financial support programmes for families affected by dementia is required to decrease its financial and psychosocial burden.

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“…Nonetheless, studies have shown caregivers' different perceptions of their roles. Numerous investigations have demonstrated that informal caregivers suffered from psychological complications, depression, stress, and mental pressure (Chiao et al, 2015 ; Lindeza et al, 2020 ). Besides, nearly one-fourth of the caregivers of patients with Alzheimer's disease had anxiety (Mahoney et al, 2005 ).…”

Section: Introductionmentioning

confidence: 99%

Explain the Experience of Family Caregivers Regarding Care of Alzheimer's Patients: A Qualitative Study

et al. 2021

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Introduction: Due to the long-term and progressive nature of Alzheimer's disease, these patients need caregivers who will be responsible for their long-term care and who may then experience an increasing burden related to the progressive disease course, so it is important to understand the experiences of caregivers. The aim of this study was to explain the experience of family caregivers regarding care of Alzheimer's patients.Methods: The present qualitative study employed a conventional content analysis approach and was conducted in Iran in 2020. This research was done through in-depth and semi-structured interviews with 11 qualified caregivers enrolled in a purposive sampling method. Interviews continued until data saturation. Data analysis was performed simultaneously with data collection. Interviews were recorded, transcribed and analyzed through Graneheim and Lundman style content analysis and data management was done with MAXQDA software. In order to achieve the accuracy and validity of the study, the Four-Dimensions Criteria (FDC) by Lincoln and Guba, credibility, dependability, confirmability, and transformability were considered and used.Results: A total of 11 caregivers with mean age and standard deviation 48, ±26.12 participated in the study. The acquired data were put in two main categories of “burnout and exhaustion” with six subcategories and “excellence and personal growth” with three subcategories.Conclusion: In this study, we found that perceptions of caregivers' role were not the same among study participants, who experienced both positive and negative dimensions of care provision to AD patients. The care experience has a spectrum that, in some people, leads to positive outcomes such as growth. A major part of caregiver challenges is related to the burden of caregiving strain and the erosive nature of the disease. Therefore, health planners should identify the challenges, pain and suffering of caregivers and seek to address them through appropriate strategies.

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Impact of dementia on informal care: a systematic review of family caregivers’ perceptions

Cited by 160 publications

References 97 publications

Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review

Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review

Facing Costs With Dementia: Daily Lives Perspectives From Informal Caregivers

Explain the Experience of Family Caregivers Regarding Care of Alzheimer's Patients: A Qualitative Study

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