Caring for older people living alone with dementia: Healthcare professionals’ experiences

Witt, Lorna de; Ploeg, Jenny

doi:10.1177/1471301214523280

Cited by 28 publications

(37 citation statements)

References 57 publications

(98 reference statements)

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“…This is similar to other healthcare professionals' experiences, as healthcare professionals working in dementia services highlighted their distress when identifying with family carers, particularly when there were similar elements to their own personal lives (Ducharme, et al 2014). Healthcare professionals have also discussed their distress and emotional struggle alongside their ethical duty to support people with dementia to live in a safe environment, and the need to internalise their actions with the belief they 'did the right thing ' (de Witt, & Ploeg, 2016).…”

Section: Negative Emotional Responses To Dementiasupporting

confidence: 52%

Development of clinical and inter-personal skills to support people living with dementia

Brooke

Stiell

2017

Journal of Paramedic Practice

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There is a lack of understanding on how paramedic students develop their knowledge, skills and attitudes to support people living with dementia and their families in the community. This qualitative study used focus groups to explore paramedic students' perspectives. 1st and 3rd year paramedic students were recruited from two ambulance service providers in the South of England. Data were collected during 2017 and four themes emerged: 1) impact of dementia on all concerned 2) challenges of communicating with people with dementia 3) negative emotional response to dementia, and 4) lack of social care and pathways for people with dementia. A further two crosscutting themes emerged: 1) Learning in the classroom and 2) Learning 'on the road'. Paramedic students did not discuss person-centered approaches to supporting people with dementia; however they all acknowledged the impact of dementia as unique to each person, their family and situation.

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Section: Negative Emotional Responses To Dementiasupporting

confidence: 52%

Development of clinical and inter-personal skills to support people living with dementia

Brooke

Stiell

2017

Journal of Paramedic Practice

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“…Very little is known about the effect of receiving a diagnosis of mild cognitive impairment (MCI) or Alzheimer’s disease (AD) for older adults living alone. A recent study [8] reported that older adults living alone with cognitive impairment distrusted and avoided healthcare providers (e.g., physicians, social workers, nurses) whom they believed did not understand their priorities. Providers, on the other hand, described the tension of meeting their responsibilities with their patients living alone with cognitive impairment as “walking the tight rope.” In particular, providers reported their unease about telling patients that they had to stop driving or relocate.…”

Section: Introductionmentioning

confidence: 99%

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

Portacolone

Johnson

Covinsky

et al. 2018

JAD

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Background One third of older adults with cognitive impairment live alone and are at high risk for poor health outcomes. Little is known about how older adults who live alone experience the process of receiving a diagnosis of mild cognitive impairment (MCI) or Alzheimer’s disease (AD). Objective The aim of this study was to understand the effects and meanings of receiving a diagnosis of MCI or AD on the lived experience of older adults living alone. Methods This is a qualitative study of adults age 65 and over living alone with cognitive impairment. Participants’ lived experiences were elicited through ethnographic interviews and participant observation in their homes. Using a qualitative content analysis approach, interview transcripts and fieldnotes were analyzed to identify codes and themes. Results Twenty-nine older adults and 6 members of their social circles completed 114 ethnographic interviews. Core themes included: relief, distress, ambiguous recollections, and not knowing what to do. Participants sometimes felt uplifted and relieved by the diagnostic process. Some participants did not mention having received a diagnosis or had only partial recollections about it. Participants reported that, as time passed, they did not know what to do with regard to the treatment of their condition. Sometimes they also did not know how to prepare for a likely worsening of their condition, which they would experience while living alone. Conclusion Findings suggest the need for more tailored care and follow-up as soon as MCI or AD is diagnosed in persons living alone.

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“…The phenomenon of "emotional labour" is widely reported among intensive care professionals (Sorensen and Iedema, 2009;Ryan and Seymour, 2013), health care assistants caring for dying cancer patients (Herber and Johnston, 2013;Lovatt et al, 2015); healthcare assistants in inpatient dementia services (Bailey et al, 2015); palliative care nurses (Skilbeck and Payne, 2003) and hospice staff (Sabo, 2008;Slocum-Gori et al, 2011). More recently, Colomer and de Vries (2016) and de Witt and Ploeg (2016) acknowledged that care home workers' emotional bonds with residents with dementia sometimes contributed to feeling physically, mentally and emotionally drained.…”

Section: Introductionmentioning

confidence: 99%

Perceived needs for support among care home staff providing end of life care for people with dementia: a qualitative study

Vandrevala

Samsi

Rose

et al. 2016

Int J Geriat Psychiatry

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Objective: The aim of the current exploratory study was to investigate the impact for care home staff of working with people with dementia at the end of life and to explore how they cope with this aspect of their work. With UK policy encouraging death in the place of residence, rather than hospital, more people with dementia are dying in care homes.Method: A qualitative approach was employed; 20 care home staff working in five English care homes were interviewed. Thematic Analysis was used to analyse the data.Results: Care home staff found the external demands on them and difficulties associated with interacting with people with dementia sometimes challenging, stressful and anxietyprovoking, particularly as residents approached end of life. Emotional aspects of caring for dying residents were sometimes heightened by close attachments with residents and their families. Staff were able to recognise these unmet needs and identified a need for further training and emotional support to manage these stressors.Conclusions: This study revealed rich and complex understanding of the practice dimensions of caring for people with dementia at the end of life and the impact these have on staff. There is a need to develop effective psychosocial interventions that focus on emotional support for care home staff. There will be challenges in providing this in employment settings that are generally low paid, low status, have high turnover and are reliant on temporary or migrant staff, where training is not rewarded, mandatory or culturally valued. 4 IntroductionCare homes are increasingly caring for frail older people at the end of their lives, and older people with cognitive impairment or dementia are more likely to die in care homes than in other settings (Moriarty, Rutter, Ross & Holmes, 2012; National End-of-life Care Intelligence Network, 2013). In recent years in England, there are increasing ambitions to avoid premature and unnecessary moves to hospital in the last weeks of life (Murtagh et al. 2012).Current government policy encourages people to 'die in place' (Department of Health, 2013; Leadership Alliance for the Care of Dying People, 2014); consistent with wishes of many families (Bayer, 2006). Research has focused on ways in which care home staff make end-oflife care decisions (e.g. Goodman et al., 2010; Moriarty, Rutter, Ross & Holmes, 2012).However, there is a need to understand the impacts on care home staff of caring for dying residents who have dementia in order to better support these workers.In England, care home staff are among the lowest paid employees (Resolution Foundation, 2015). Staff working in care homes are often under pressure in their work and experience both psychological and physical strain, including injuries and depression (Walsh, 2006;Zimmerman et al., 2005). There is high staff turnover in some care homes (Franklin, 2014) and staff working with people with dementia are less likely to be trained than other care workers (Hussein and Manthorpe 2011).Furthermore, staff working with...

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Caring for older people living alone with dementia: Healthcare professionals’ experiences

Cited by 28 publications

References 57 publications

Development of clinical and inter-personal skills to support people living with dementia

Development of clinical and inter-personal skills to support people living with dementia

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

Perceived needs for support among care home staff providing end of life care for people with dementia: a qualitative study

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