scholarly journals 515 - Developing an observational instrument for people with somatic care needs to review Person-Centred Care in Nursing Homes

2021 ◽  
Vol 33 (S1) ◽  
pp. 65-65
Author(s):  
Claudia van der Velden ◽  
Elsemieke van Belzen ◽  
Henriëtte van der Roest
Keyword(s):  
Quality Of Life ◽  
Staff Development ◽  
Nursing Staff ◽  
Structured Interviews ◽  
Care Needs ◽  
Term Care ◽  
People With Dementia ◽  
Main Components ◽  
Positive Results

Healthcare professionals working with people with dementia (PwD) increasingly apply a person-centred care (PCC) model instead of task-oriented models of healthcare. Several studies have shown positive results of PCC on the quality of life of PwD. The PCC-model has not only shown positive results in the quality of life of PwD, but also for people with somatic needs.Dementia Care Mapping (DCM) is a dementia-specific observational tool that is used worldwide in long- term care facilities (LTCFs) for developing PCC-practice, but also to review staff development- and training needs. LTCFs providing care for people with somatic needs also have the need of a instrumentlike DCM, but nothing specific is available. In this project we develop, together with a Dutch nursing home and DCM-Netherlands, a method that suits this target group with the same aims as DCM.An iterative design has been applied. Based on a literature search and experience of the project group, a method has been developed. This method consists of three main components: (1)group observation with components of DCM, (2)structured interviews with residents and (3)feedback sessions with professionals and individual feedback for residents. To determine if the method meets the needs of practice, several expert groups (residents, informal caregivers and nursing staff) where asked about the content and feasibility using interviews/focus group. Furthermore in a pilot, the method will be tested by experienced DCM-mappers in practice, based on the outcomes of this pilot adjustments will be made.We are currently in the pilot phase and expecting to finalise the method with instruction manual coming summer. First feedback of the project- and expert groups are very positive. The nursing staff endorse the need of this instrument, and also feel it contributes to a better PCC-attitude. On the other hand, they emphasize that implementation can be challenging, because of time constraints in daily care.

Dementia from the inside: how people with early-stage dementia evaluate their quality of life

2005 ◽  
Vol 25 (2) ◽  
pp. 197-214 ◽  
Author(s):  
TOWAKO KATSUNO
Keyword(s):  
Quality Of Life ◽  
Health Care Professionals ◽  
Early Stage ◽  
Structured Interviews ◽  
Psychosocial Wellbeing ◽  
People With Dementia ◽  
Quality Of Life Scale ◽  
Quality Of Life Index ◽  
Item Quality

The purposes of this study were to explore the self-rated and objectively measured quality of life of people with early-stage dementia and to describe their personal experiences and reactions to the negative public view of dementia. Information was collected from 23 participants who lived in a mid-western United States metropolitan area. Self-ratings were collected by semi-structured and structured interviews, and the objective measures were the Quality of Life Index (QLI) and the Single Item Quality of Life Scale (SIQLS). It was found that 21 of the participants perceived their current QOL as ‘good’ or better, and that the mean scores for the QLI and the SIQLS were 22.8 and 7.3 respectively. Triangulation of the subjective and objective data established their congruence. The QLI scores suggested that people with early-stage dementia often perceived their current life as good and that the participants were as satisfied with their life as the general population. Their accounts also revealed that many had experienced stigma and that this appreciably affected their psychosocial wellbeing. The findings of this study provide new insights into the ways in which health-care professionals and the general public can and should view and treat people with dementia.

Multiple perspectives on quality of life for residents with dementia in long term care facilities: protocol for a comprehensive Australian study

2015 ◽  
Vol 27 (10) ◽  
pp. 1739-1747 ◽  
Author(s):  
Elizabeth Beattie ◽  
Maria O’Reilly ◽  
Wendy Moyle ◽  
Lynn Chenoweth ◽  
Deirdre Fetherstonhaugh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Long Term Care ◽  
Self Report ◽  
Care Staff ◽  
National Study ◽  
Term Care ◽  
People With Dementia ◽  
Care Facilities

ABSTRACTBackground:Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL.Methods:The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations.Conclusions:This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

A life history intervention for individuals with dementia: a randomised controlled trial examining nursing staff empathy, perceived patient personhood and aggressive behaviours

2015 ◽  
Vol 36 (10) ◽  
pp. 2061-2089 ◽  
Author(s):  
HEATHER ERITZ ◽  
THOMAS HADJISTAVROPOULOS ◽  
JAIME WILLIAMS ◽  
KRISTINE KROEKER ◽  
RONALD R. MARTIN ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life History ◽  
Nursing Staff ◽  
Life Histories ◽  
Controlled Trial ◽  
Staff Perceptions ◽  
Term Care ◽  
Aggressive Behaviours ◽  
Randomised Controlled

ABSTRACTBehaviours of concern (e.g.aggression) are often present in residents of long-term care (LTC) facilities diagnosed with dementia and may impact quality of life. Prior uncontrolled research has shown that an intervention involving sharing resident life histories may be effective in reducing aggressive behaviours and improving quality of life, perhaps by increasing staff empathy. We used a randomised controlled design, involving a considerably larger sample than previous investigations. We also examined staff perceptions of LTC resident personhood in relation to aggressive behaviour. Seventy-three residents were randomised to either a life history intervention (N = 38) or a control condition (N = 35). Ninety-nine nurses and care aides answered questionnaires about their own attitudes and the residents' behaviours and quality of life at baseline, post-intervention and at follow-up. Results of mixed-effects modelling indicated significant differences between groups in personhood perception and resident quality of life. Personhood perception mediated the relationship between the intervention and improved quality of life. We identified significant negative correlations between resident cognitive impairment and staff perceptions of resident personhood. Qualitative findings suggested that staff primarily changed their verbal interactions with residents following the intervention, which may be particularly helpful for residents with the most severe dementia. Our results indicate that LTC residents benefit when life histories are constructed with their families and shared with nursing staff.

Art Activities and Quality of Life for People With Dementia in the Long Term Care Setting: A Case Series

2014 ◽  
Vol 15 (3) ◽  
pp. B3
Author(s):  
Rebecca S. King-Tucker ◽  
Rebecca S. King-Tucker ◽  
Maria Knupp ◽  
Terry Edwards ◽  
Elizabeth Walters
Keyword(s):  
Quality Of Life ◽  
Care Setting ◽  
Long Term Care ◽  
Case Series ◽  
Term Care ◽  
People With Dementia ◽  
Art Activities

scholarly journals The effects of placement on dementia care recipients’ and family caregivers’ quality of life: a literature review

2017 ◽  
Vol 18 (1) ◽  
pp. 44-57 ◽  
Author(s):  
Heehyul Moon ◽  
Peggye Dilworth-Anderson ◽  
Johannes Gräske
Keyword(s):  
Quality Of Life ◽  
Long Term Care ◽  
Research Literature ◽  
Term Care ◽  
Content Type ◽  
Care Recipients ◽  
People With Dementia ◽  
Care Facilities

Purpose The purpose of this paper is to review and synthesize the research literature on the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. Design/methodology/approach Four databases – AgeLine, Medline, EBSCO, and PyscINFO – were searched and the relevant literature from 2002 onwards was reviewed. Findings The review of 12 studies (five studies, including only family CGs; six studies including residents; one study including both family CGs and CRs) reveals a discrepancy regarding the effects of institutionalization on the CRs’ and CGs’ QoL. Among seven studies on CRs’ QoL change, some reviewed studies found a significant decline in CRs’ QoL after placement with others showing that CRs’ QoL was improved or stable. While some reports indicated that some family CGs benefited from placement, others showed that CGs merely maintained their QoL. However, family CGs in the reviewed studies were more likely to report improved QoL than were their CRs after institutionalization. Research limitations/implications The authors recommend that future studies should focus on understanding the individual’s adaptation to placement, dyadic changes in QoL (including mediators/moderators). They emphasize the need for a comprehensive longitudinal study with more than one wave and includes diverse groups including racial/ethnic minority CGs and CRs. Originality/value This study reviewed and synthesized the research literature on the QoL of both caregiver and the people with dementia they cared for after those they cared for were admitted to long-term care facilities. The conclusions drawn about influences on QoL provide guidance for identifying best practices and research.

scholarly journals Monitoring changes in the organization of Dutch long-term care and their effects on the mental health and wellbeing of people with dementia

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
H van der Roest ◽  
M Prins ◽  
J van Erp ◽  
E Hartstra ◽  
A van der Schot
Keyword(s):  
Quality Of Life ◽  
Cognitive Impairment ◽  
Nursing Homes ◽  
Long Term Care ◽  
Behavioral Symptoms ◽  
Term Care ◽  
People With Dementia ◽  
Over Time

Abstract Background The 'Living Arrangements for People with Dementia (LAFD)' monitor-study aims to provide insight into effects of changes in the organization of Dutch long-term care for people with dementia. The objective of this study is to evaluate changes over time in the level of cognitive impairment, the frequency and severity of behavioral symptoms, and quality of life of residents with dementia, and changes in staffing levels. The study allows for detection of trends and developments that are relevant for the quality of nursing home care. Methods The LAFD-study is a repeated cross-sectional study. Since 2008, assessments have been conducted in participating nursing homes every two year. Up to 2020, five assessments have been completed. The number of participating nursing homes over time ranged from 47 to 144 and a sample of one third of residents was included in the study. Data collection was performed by care professionals. Cognitive impairment was assessed with the Cognitive Performance Scale, frequency and severity of behavioral symptoms were assessed with the Neuropsychiatric Inventory; quality of life was assessed with de Qualidem. Per nursing home, the amount of direct provided care was inventoried. Results Assessments up to 2017/2018 showed an improvement in cognitive functioning and quality of life in Dutch nursing homes. The amount of behavioral problems did not change, as did the amount of direct care. However, the level of professional caregivers increased slightly. In the last assessment, 53 nursing homes participated, and 668 residents were included. The fast majority of participants was over 80 years of age (67.1%) and 68.5% were female. The data are currently being further analyzed and presented at the conference. Conclusions There is a trend of improvement in cognitive functioning and quality of life up to 2018. The most recent assessment will indicate whether these positive trends continue.

scholarly journals Exploring the impact of Covid-19 on the care and quality of life of people with dementia and their carers: A scoping review

Dementia ◽  
2021 ◽  
pp. 147130122110539
Author(s):  
Patricia Masterson-Algar ◽  
Maria Cheshire Allen ◽  
Martin Hyde ◽  
Norah Keating ◽  
Gill Windle
Keyword(s):  
Quality Of Life ◽  
Social Services ◽  
Scoping Review ◽  
Negative Impact ◽  
Care Needs ◽  
Health And Social Services ◽  
People With Dementia ◽  
Severity Of Dementia ◽  
The Impact

This article reports on findings of a scoping review aimed to map the published literature concerning the impact of Covid-19 on the care and quality of life of people living with dementia and their carers. Twenty-nine articles were included in the review. Three overarching themes were identified: (1) Impact on people with dementia – unmet and increased care needs; (2) Impact on carers – increased stress and burden and (3) Impact according to demographics. Overall, findings show that Covid-19 has led to a reduction in support from health and social services and to a move towards technology-based support. Furthermore, Covid-19 has had a negative impact on the care and quality of life of people living with dementia and their carers, and that this impact was influenced by the severity of dementia.

scholarly journals The Priorities of People with Mesothelioma: A Qualitative Study of Trial Participation and Treatment Decisions

2021 ◽  
Author(s):  
Anna Bibby ◽  
Anna J Morley ◽  
Emma Keenan ◽  
Nick A Maskell ◽  
Rachael Gooberman-Hill
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Treatment Options ◽  
Randomised Trial ◽  
Research Participation ◽  
Trial Participation ◽  
Structured Interviews ◽  
Care Needs ◽  
Physical Strength

Abstract BackgroundTreatment options for mesothelioma are increasing, as are the number of clinical trials available to patients. However, little is known about patients’ and relatives’ priorities when making decisions about treatment and trial participation. MethodsFace to face, semi-structured interviews were undertaken with mesothelioma patients who were participating in the TILT trial (a randomised trial of intra-pleural immunotherapy) and their relatives. Interviews were audio-recorded, transcribed and analysed thematically. ResultsTwelve people were interviewed, comprising five mesothelioma patients and seven relatives. Four themes were identified relating to the experience of mesothelioma: physicality, quality of life, uncertainty and risk, and anxiety and the future. A further theme related to attitudes to research participation.Participants valued physical strength and were careful not to jeopardise this with potential side effects of medication. Quality of life was important and was often prioritised over survival. Participants found ambiguity challenging and sought certainty, potentially in response to the uncertainty surrounding their future. The desire for certainty impacted on risk perception; an important factor in decision-making. Relatives often advocated on behalf of patients and were more reluctant about research participation due to concern about potential risks.ConclusionThe study confirmed previous qualitative findings around physicality, uncertainty and relatives as advocates, building on these themes to highlight their influence on decision-making. Important findings for practice include the challenges associated with risk communication and the differing care needs of relatives.

scholarly journals Impact of Massage Therapy on Fatigue, Pain, and Spasticity in People with Multiple Sclerosis: a Pilot Study

2016 ◽  
Vol 9 (4) ◽  
pp. 4 ◽  
Author(s):  
Deborah Backus, PT, PhD ◽  
Christine Manella, PT, MT ◽  
Anneke Bender, MPT ◽  
Mark Sweatman, PhD
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Massage Therapy ◽  
Secondary Outcome ◽  
Care Needs ◽  
Cognitive Changes ◽  
Term Care ◽  
For Profit

Background: Multiple sclerosis (MS) is a chronic, immune-mediated, inflammatory disease that leads to fatigue, pain, and spasticity, as well as other sensorimotor and cognitive changes. Often traditional medical approaches are ineffective in alleviating these disruptive symptoms. Although about one-third of surveyed individuals report they use massage therapy (MT) as an adjunct to medical treatment, there is little empirical evidence that MT is effective for symptom management in people with MS.Purpose: To measure the effects of MT on fatigue, pain, spasticity, perception of health, and quality of life in people with MS.Setting: Not-for-profit long-term care facility.Participants: Twenty-four of 28 enrolled individuals with MS (average age = 47.38, SD = 13.05; 22 female) completed all MT sessions and outcome assessments.Research Design: Nonrandomized, pre–post pilot study.Intervention: Standardized MT routine one time a week for six weeks.Main Outcome Measure(s): Modified Fatigue Index Scale (MFIS), MOS Pain Effects Scale (MOS Pain), and Modified Ashworth Scale (MAS). Secondary outcome measures: Mental Health Inventory (MHI) and Health Status Questionnaire (HSQ).Results: There was a significant improvement in MFIS (p < .01), MOS Pain (p < .01), MHI (p < .01), and HSQ (p < .01), all with a large effect size (ES) (Cohen’s d = -0.76, 1.25, 0.93, -1.01, respectively). There was a significant correlation betweenchange scores on the MFIS and the MOS Pain (r = 0.532, p < .01), MHI (r = -0.647, p < .01), and subscales of the HSQ (ranging from r = -0.519, to -0.619, p < .01).Conclusions: MT as delivered in this study is a safe and beneficial intervention for management of fatigue and pain in people with MS. Decreasing fatigue and pain appears to correlate with improvement in quality of life, which is meaningfulfor people with MS who have a chronic disease resulting in long-term health care needs.

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