scholarly journals A qualitative study of the views of residents with dementia, their relatives and staff about work practice in long-term care settings

2005 ◽  
Vol 17 (2) ◽  
pp. 237-251 ◽  
Author(s):  
Georgina Train ◽  
Shirley Nurock ◽  
Ginnette Kitchen ◽  
Monica Manela ◽  
Gill Livingston
Keyword(s):  
Qualitative Study ◽  
Challenging Behavior ◽  
Long Term Care ◽  
Work Practice ◽  
Staff Retention ◽  
Structured Interviews ◽  
Term Care ◽  
Staffing Levels ◽  
People With Dementia

Background: Most people living in 24-hour care settings have dementia, and little is known about what makes long-term care a positive experience for them.Method: This carer-led qualitative study examined working practices in 24-hour long-term care-settings, including hospitals, nursing and residential homes, with the aim of finding out and making recommendations about such settings. Using semi-structured interviews, managers, nurses and care assistants were asked about work practices, such as how they coped with difficult behavior, about shifts, staffing levels, staff retention and training. Relatives of residents with dementia were asked about their role and perceptions of the care provided, and residents were asked for their opinions of their care.Results: Staff reported that residents presented with increasingly challenging behavior compared to the past, and that sometimes staffing levels and skills were inadequate. Of all the settings, hospitals had the most problems with staffing levels and retention, staff-relative relationships and staff support systems. Relatives saw their own role as positive. People with dementia of varying severity could usefully evaluate some of the services they received.Discussion: Dementia-specific training and education of staff in all long-term care-settings, including induction, should address the management of problem behavior in dementia and thereby improve staff fulfilment and relatives' satisfaction. The long-stay hospital may not be appropriate as a “home for life” for those with dementia, and we recommend that long-stay care settings should be able to cater flexibly for a range of resident needs.

Dementia in rural settings: examining the experiences of former partners in care

2017 ◽  
Vol 39 (2) ◽  
pp. 340-357 ◽  
Author(s):  
RACHEL V. HERRON ◽  
MARK W. ROSENBERG
Keyword(s):  
Long Term Care ◽  
Structured Interviews ◽  
Northern Ontario ◽  
Term Care ◽  
Home Support ◽  
People With Dementia ◽  
Rural Settings ◽  
Informal Carers ◽  
Person With Dementia

ABSTRACTInformal carers, also referred to as partners in care, provide the bulk of care to people living with dementia across a range of community settings; however, the changing experiences and contexts of providing informal care for people with dementia in rural settings are under-studied. Drawing on 27 semi-structured interviews with former partners in care in Southwestern and Northern Ontario, Canada, we examine experiences of providing and accessing care over the course of the condition and across various settings. Our findings illustrate the challenges associated with navigating the system of care, finding people who understand dementia in the surrounding community, negotiating hours of home support, facing resistance to respite from the person with dementia, and feeling pressured into long-term care. We argue that partners' time, bodies and choices are spatially constrained within rural and small-town settings and the current systems of home, community and long-term care.

scholarly journals 553 - A promising Dutch initiative for highly intelligent seniors affected by dementia: a qualitative evaluation of Studiegroepen day time activities in long term care

2021 ◽  
Vol 33 (S1) ◽  
pp. 94-94
Author(s):  
Ruslan Leontjevas ◽  
Monique Luyendijk ◽  
Rico Kremer ◽  
Debby L. Gerritsen
Keyword(s):  
Long Term Care ◽  
Informal Caregivers ◽  
Barriers And Facilitators ◽  
Structured Interviews ◽  
Term Care ◽  
Highly Educated ◽  
Positive Effects ◽  
People With Dementia ◽  
At Home

Background:Long term care organisations in the Netherlands organize day time activities for people with dementia who receive care at home to prevent burden of informal caregivers. Clients with dementia that are characterised as highly educated and/or highly intelligent often refuse to participate in such activities. Boredom, a lack of association with and unwillingness to mix with other participants are often reported. In 2006, the spiritual counselling department of long term care organisation Respect, The Hague, started with Studiegroepen (pronounced ‘studee-groo-pen’, study groups). This initiative provides adjusted leisure activities and group conversations about present-day topics and shared life experiences.Existential philosophical themes form the basis for discussions. Although Studiegroepen seems very successful and there are long waiting lists, the program is barely studied and is unknown in other organisations.Aims:(1) to explore the opinions of the participants, their informal caregivers (mainly partners), and spiritual counsellors about Studiegroepen and the way the program meets the participants needs for autonomy, competence and relatedness (Self Determination Theory); (2) for the development of implementation material for other organisations, the aim was to reveal specific components of the program and to explore their barriers and facilitators.Results:A thematic analysis in Atlas.ti of semi-structured interviews with 15 clients, eight informal caregivers and four spiritual counsellors revealed extremely positive evaluations. There were strong indications that the program meets clients’ needs for autonomy, competence and relatedness. A striking example of a positive evaluation was a cancellation of relocation of a client-partner couple due to the lack of Studiegroepen in that city. Results suggest positive effects on mood, and quality of life. Several informal caregivers perceived a delay in dementia progression. The research revealed specific program components and barriers and facilitators to implement them.Conclusions:Studiegroepen is a very positively evaluated initiative for highly educated and/or highly intelligent long time care clients with dementia living at home. This initiative should be systematically studied and described, while implementation material needs to be developed. This may help to introduce the program in other organisations and to further explore effects on outcomes in participants, and in informal caregivers.

scholarly journals Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia

2016 ◽  
Vol 31 (7) ◽  
pp. 651-660 ◽  
Author(s):  
Clare Ellis-Smith ◽  
Catherine J Evans ◽  
Fliss EM Murtagh ◽  
Lesley A Henson ◽  
Alice M Firth ◽  
...  
Keyword(s):  
Palliative Care ◽  
Long Term Care ◽  
Cognitive Interviews ◽  
Structured Interviews ◽  
Term Care ◽  
Communication Problems ◽  
People With Dementia ◽  
Palliative Care Outcome Scale ◽  
Care Outcome

Background: Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale–Symptom and Integrated Palliative care Outcome Scale. Aim: To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia. Design: A multi-method qualitative study consisting of focus groups, semi-structured interviews and cognitive interviews. Setting/participants: Three residential long-term care settings in London, UK. Focus group and semi-structured interview participants included caregiver staff, family, general practitioners and district nurses. Caregiver staff were sampled purposively for cognitive interviews. Results: A total of 26 respondents participated in the focus groups ( n = 21) or semi-structured interviews ( n = 5) and 10 caregiver staff completed cognitive interviews. Additional symptoms and problems included agitation, wandering, sleep problems, communication problems and diarrhoea. Refinements or lay terms were required to improve comprehension and consistency of item response for nausea, drowsiness, delusions/hallucinations, agitation, loss of interest, communication problems and interaction. A video presentation was required to support comprehension of instructions and assessment of verbally compromised residents. Conclusion: Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia. It is suitable for caregiver staff without professional training as it has been refined and tailored to maximise caregiver expertise, ready for further psychometric testing.

Pharmacists’ perspectives on medication reviews for long-term care residents with advanced dementia: a qualitative study

2019 ◽  
Vol 41 (4) ◽  
pp. 950-962 ◽  
Author(s):  
Domenica Disalvo ◽  
Tim Luckett ◽  
Alexandra Bennett ◽  
Patricia Davidson ◽  
Meera Agar
Keyword(s):  
Qualitative Study ◽  
Long Term Care ◽  
Advanced Dementia ◽  
Term Care ◽  
Medication Reviews

scholarly journals “We Are Doing These Things So That People Will Not Laugh at Us”: Caregivers’ Attitudes About Dementia and Caregiving in Nigeria

2021 ◽  
pp. 104973232110041
Author(s):  
Candidus C. Nwakasi ◽  
Kate de Medeiros ◽  
Foluke S. Bosun-Arije
Keyword(s):  
The United States ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Awareness Campaigns ◽  
Knowledge Deficit ◽  
People With Dementia ◽  
Qualitative Descriptive ◽  
The Impact

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.

scholarly journals Evaluating the integration of palliative care in national health systems: an indicator rating process with EAPC task force members to measure advanced palliative care development

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Natalia Arias-Casais ◽  
Eduardo Garralda ◽  
Miguel Antonio Sánchez-Cárdenas ◽  
John Y. Rhee ◽  
Carlos Centeno
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Long Term Care ◽  
Task Force ◽  
National Level ◽  
Structured Interviews ◽  
Term Care ◽  
Care Facilities ◽  
Rating Process

Abstract Background Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. Aim To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. Methods A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. Results The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines. Conclusion Meaningful contributions are being made in Europe towards the integration of PC into the explored fields. These efforts should be assessed in future regional mapping studies using indicators to deliver a more complete picture of PC development.

Quality in long-term care homes for people with dementia: an assessment of specialist provision

2006 ◽  
Vol 26 (4) ◽  
pp. 649-668 ◽  
Author(s):  
SIOBHAN REILLY ◽  
MICHELE ABENDSTERN ◽  
JANE HUGHES ◽  
DAVID CHALLIS ◽  
DAN VENABLES ◽  
...  
Keyword(s):  
Social Services ◽  
Research Evidence ◽  
Long Term Care ◽  
Term Care ◽  
North West ◽  
People With Dementia ◽  
National Service Framework ◽  
Specialist Services ◽  
Care Regimes

There has been debate for some years as to whether the best model of care for people with dementia emphasises specialist facilities or integrated service provision. Although the United Kingdom National Service Framework for Older People recommended that local authority social services departments encourage the development of specialist residential care for people with dementia, uncertainty continues as to the benefits of particular care regimes, partly because research evidence is limited. This paper examines a large number of ‘performance measures’ from long-term care facilities in North West England that have residents with dementia. Of the 287 in the survey, 56 per cent described themselves as specialist services for elderly people with mental ill-health problems (known familiarly as ‘EMI homes’). It was envisaged that EMI homes would score higher than non-EMI homes on several measures of service quality for people with dementia that were developed from research evidence and policy documents. The analysis, however, found that EMI homes performed better than non-EMI homes on only a few measures. While both home types achieved good results on some standards, on others both performed poorly. Overall, EMI and non-EMI homes offered a similar service.

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