Support for families of patients dying with dementia: A qualitative analysis of bereaved family members' experiences and suggestions

Muders, Pia; Zahrt-Omar, Corinna Aruna; Bussmann, Sonja; Haberstroh, Julia; Weber, M.

doi:10.1017/s1478951513001107

Cited by 28 publications

(92 citation statements)

References 26 publications

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“…Topics: characteristics of an ideal dementia-specific community care service, the ideal outcomes or achievements of a dementia-specific community care service. 2013/ Singapor [89]Vaingankar et al63 informal CGs; 60% female20% spouse; mean age = 52.9 yearsTen focus group and 12 semi-structured interviews (funnel approach). Topics: experiences and discussion focused on each identified unmet needs or challenges. 2014/ Germany [90]Muders et al85 CGsQuestionnaire with two open-ended questions. Topics: exploration and documentation of the CG’s needs and identification of the healthcare professionals to adequately support them. 2015/ USA [91]Meyer et alTen vietnamese informal CGs; seven female; two spouse; mean age = 55Semi-structured interviews ( n = 10 CGs).…”

Section: Resultsmentioning

confidence: 99%

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

et al. 2017

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BackgroundThis study aims to review the methodologies used to identify the needs, the existing needs assessment instruments and the main topics of needs explored among caregivers of patients with mild cognitive impairment to dementia.MethodsMEDLINE, PsycINFO, The Cochrane Library and Web of science were searched from January 1980 to January 2017. Research studies in English or French were eligible for inclusion if they fulfilled the following criteria: quantitative, qualitative and mixed method studies that used instrument, focus group or semi-structured interviews to assess the informal caregiver’s needs in terms of information, coping skills, support and service.ResultsSeventy studies (n = 39 quantitative studies, n = 25 qualitative studies and n = 6 mixed method studies) met the inclusion criteria and were included. Thirty-six quantitative instruments were identified but only one has been validated for the needs assessment of dementia caregivers: the Carer’s Needs Assessment for Dementia (CNA-D). The main areas of needs explored in these instruments were: information, psychosocial, social, psychoeducational and other needs.ConclusionsNo instrument has been developed and validated to assess the needs of informal caregivers of patients with cognitive impairment, whatever the stage and the etiology of the disease. As the perceived needs of caregivers may evolve with the progression of the disease and the dementia transition, their needs should be regularly assessed.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-017-0481-9) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

et al. 2017

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“…7 The existing evidence shows that higher rates of anxiety and depression on the family caregivers of people with dementia are likely to be found when compared with caregivers of people without this health problem. [8][9][10] Evidence also shows that despite the caregivers' exhaustion and physical burden, they constantly delay seeking help and neglect their own health. 11 The level of family burden caused by dementia, even in the early stages, is recognized as a public health problem.…”

Section: Introductionmentioning

confidence: 99%

“…11 The level of family burden caused by dementia, even in the early stages, is recognized as a public health problem. 10 The increasing caregivers' burden is very likely to determine the elderly institutionalization. Multiple hospital admissions preceding institutionalization are also very common.…”

Section: Introductionmentioning

confidence: 99%

“…12 Caring for people with dementia, particularly during the severe stage, usually has negative effects on the psychological health and psychological morbidity 8,13 and sleep disorders 14 or ultimately result in patient's neglect or abuse. 10 Caring for a person with dementia is one of the most difficult and often enduring caregivers' life experiences. As human beings, they feel compelled to maintain their own emotional balance and independence in self-care.…”

Section: Introductionmentioning

confidence: 99%

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The experience of psychological distress in family caregivers of people with dementia: A cross-sectional study

Abreu

Rodrigues²,

Sequeira

et al. 2017

Perspect Psychiatr Care

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“…Prior research demonstrated that individuals and families are in need of education and information about AD [12, 13]. An analysis of the Porter Novelli Health Styles survey data indicated that close to 30 % of consumers have searched specifically for cognition and AD-related information online [14].…”

Section: Introductionmentioning

confidence: 99%

Increasing Community Awareness About Alzheimer’s Disease in Puerto Rico Through Coffee Shop Education and Social Media

et al. 2016

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Alzheimer’s disease (AD) is the fourth leading cause of death in Puerto Rico. Using multi-media resources and in-person education may be an effective approach to improve knowledge and awareness of AD. The Un Cafépor el Alzheimer program in Puerto Rico incorporates an education component at coffee shops and a social media campaign using Facebook. The current study evaluates this initiative through an analysis of pre/post education survey results and social media content and use. Surveys contained close-ended and open-ended questions to understand participants’ perceptions and knowledge about AD. Post-education surveys also included questions related to program satisfaction. Social media analysis of the Facebook community page examined posts from March 1 to September 30, 2015. Descriptive statistics were used to analyze survey and Facebook data. Four education sessions were conducted with a total of 212 participants. Fifty-one of the participants completed both pre- and post-surveys. Following the education program participants reported improved knowledge of risk and protective factors. All participants reported learning new information from the program. There were a total of 250 posts on the Un Cafépor el Alzheimer community Facebook page; 168 posts related to AD. The Facebook page reached 294,109 people, with 9963 page likes, 610 comments, 17,780 post clicks, and 3632 shares. There was an average increase of 64.8 % in number of people reached by the Facebook page following the education sessions. The approach of combining social media resources and in-person education is beneficial to increase public awareness of AD and disseminate health information.

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Support for families of patients dying with dementia: A qualitative analysis of bereaved family members' experiences and suggestions

Abstract: Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.

Cited by 28 publications

References 26 publications

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

The experience of psychological distress in family caregivers of people with dementia: A cross-sectional study

Increasing Community Awareness About Alzheimer’s Disease in Puerto Rico Through Coffee Shop Education and Social Media

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