scholarly journals How Singing can Help People With Dementia and Their Family Care-Partners: A Mixed Studies Systematic Review With Narrative Synthesis, Thematic Synthesis, and Meta-Integration

2021 ◽  
Vol 12 ◽  
Author(s):  
Zara Thompson ◽  
Felicity A. Baker ◽  
Jeanette Tamplin ◽  
Imogen N. Clark
Keyword(s):  
Quality Of Life ◽  
Quantitative Data ◽  
Qualitative Data ◽  
Well Being ◽  
Narrative Synthesis ◽  
Thematic Synthesis ◽  
People With Dementia ◽  
Care Partners ◽  
The Impact

Background: Recent research on the efficacy of music-based interventions for people with dementia have focused on specific outcomes and methods, and singing has been noted as a particularly beneficial activity. However, due to heterogeneity of research methods, there is a need to synthesise the findings of both quantitative and qualitative research in order to better understand both the impact and potential mechanisms of singing for people in this population.Method: This systematic review included quantitative, qualitative and mixed-methods studies, and analysed these using a systematic mixed-studies synthesis (with a results-based convergent approach). Quantitative and qualitative data were initially synthesised using a narrative synthesis and thematic synthesis method, respectively, before a final meta-integration method was used to synthesise common themes across the two data forms.Results: Electronic and hand search strategies revealed 1,815 relevant studies, 40 of which met the full eligibility criteria. Narrative synthesis of quantitative data revealed six key outcome areas (quality of life; psychological well-being; cognition; engagement; activities of daily living; care-partner well-being), and thematic synthesis of qualitative data generated seven themes relating to the impact and mechanisms of singing (pragmatic elements; social benefits; mood; identity; memory; flow-on effects; and relationships). Meta-integration identified four key areas relating to the impact and mechanisms of singing for people with dementia and care-partners: psychological well-being, quality of life, cognition, and care-partner well-being.Conclusion: Results from the syntheses suggest that singing can positively impact the lives of people with dementia and their care-partners, although due to heterogeneity of study design and outcome measures, it is difficult to draw conclusions based on quantitative data alone. Qualitative data provides further context and insights from participant perspectives, and when integrated with quantitative data, contextual factors that may influence the benefits that participants experience from singing are revealed.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

Quality of Life for People With Dementia Living in Residential and Nursing Home Care: The Impact of Performance on Activities of Daily Living, Behavioral and Psychological Symptoms, Language Skills, and Psychotropic Drugs

2001 ◽  
Vol 13 (1) ◽  
pp. 93-106 ◽  
Author(s):  
Clive Ballard ◽  
John O'Brien ◽  
Ian James ◽  
Pat Mynt ◽  
Marisa Lana ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Activities Of Daily Living ◽  
Psychotropic Drugs ◽  
Daily Living ◽  
Psychological Symptoms ◽  
Well Being ◽  
Nursing Home Care ◽  
People With Dementia ◽  
The Impact

Many people with dementia reside in care facilities. Little is known about how key parameters impact upon their quality of life (QOL). All 209 people with dementia in six facilities received a standardized assessment (Neuropsychiatric Inventory [NPI], Barthel Scale, psychotropic drugs). One hundred twelve residents were assessed using Dementia Care Mapping, an observational method for QOL indices. Lower performance on activities of daily living (reduced well-being [WB] r = +0.39, p < .0001; social withdrawal [SW] r = +0.42, p < .0001; engagement in activities [EA] r = +0.31, p = .001) and taking psychotropics (WB 2.5 vs. 3.2, t = .2.3, p = .02; SW 11.4% vs. 2.7%, t = 3.0, p = .004; EA 56.5% vs. 71.9%; t = 3.5, p = .001) were associated with reduced QOL, but symptoms from the NPI were not. More focused prescribing of psychotropics and better staff training are essential.

Art museum-based intervention to promote emotional well-being and improve quality of life in people with dementia: The ARTEMIS project

Dementia ◽  
2017 ◽  
Vol 17 (6) ◽  
pp. 728-743 ◽  
Author(s):  
Arthur Schall ◽  
Valentina A Tesky ◽  
Ann-Katrin Adams ◽  
Johannes Pantel
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Art Museum ◽  
Cognitive Status ◽  
Medium Effect ◽  
Controlled Study ◽  
Subjective Well Being ◽  
People With Dementia ◽  
Care Partners

ARTEMIS (ART Encounters: Museum Intervention Study) is an art-based intervention designed especially for people with dementia and their care partners that involves a combination of museum visits and artistic activity. This paper reports the results of a randomized wait-list controlled study on the influence of the ARTEMIS intervention on the emotional state, well-being, and quality of life of dementia patients. People with mild-to-moderate dementia (n = 44) and their care partners (n = 44) visited the Frankfurt Städel Museum once a week on six pre-arranged occasions. The intervention consisted of six different guided art tours (60 minutes), followed by art-making in the studio (60 minutes). Independent museum visits served as a control condition. A mixed-methods design was used to assess several outcomes including cognitive status, emotional well-being, self-rated aspects of quality of life, and subjective evaluations by informal caregivers. In a pre-post-assessment, we found significant improvements in participants’ self-rated quality of life (t = −3.15, p < .05). In a situational assessment of emotional well-being immediately before and after each of the museum sessions, we were able to demonstrate statistically significant positive changes with medium effect sizes (dcorr = .74–.77). Furthermore, the total Neuropsychiatric Inventory score as well as the affective (depressed mood and anxiety) and apathy subscales were significantly lower after the ARTEMIS intervention (tNPI total = 2.43; tNPI affective = 2.24; tNPI apathy = 2.52; p < .05). The results show that art museum-based art interventions are able to improve the subjective well-being, mood, and quality of life in people with dementia. This promising psychosocial approach deserves further attention in future studies and consideration in community-based dementia care programs.

TOP CITED PAPERS IN INTERNATIONAL PSYCHOGERIATRICS: 6a. QUALITY OF LIFE FOR PEOPLE WITH DEMENTIA LIVING IN RESIDENTIAL AND NURSING HOME CARE: THE IMPACT OF PERFORMANCE ON ACTIVITIES OF DAILY LIVING, BEHAVIORAL AND PSYCHOLOGICAL SYMPTOMS, LANGUAGE SKILLS, AND PSYCHOTROPIC DRUGS

2009 ◽  
Vol 21 (6) ◽  
pp. 1026-1030 ◽  
Author(s):  
C. Ballard ◽  
M. Margallo-Lana ◽  
J. T. O'Brien ◽  
I. James ◽  
R. Howard ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychological Symptoms ◽  
Social Withdrawal ◽  
Care Home ◽  
Well Being ◽  
Nursing Home Care ◽  
People With Dementia ◽  
The Impact ◽  
Behavioral And Psychological Symptoms

The majority of people with dementia develop behavioral and psychological symptoms of dementia (BPSD) at some point during their illness (Jeste et al., 2008). These symptoms, which are especially common among care home residents, are frequently distressing for the patients who experience them (Gilley et al., 2006; Jeste et al., 2008) and problematic for their professional and/or family caregivers. The starting point for our paper “Quality of life for people with dementia living in residential and nursing home care: the impact of performance on activities of daily living, behavioral and psychological symptoms, language skills, and psychotropic drugs” (Ballard et al., 2001) was to try and understand the impact of BPSD, function and language skills on quality of life in care home residents with dementia. Although there were frequent statements in previous work referring to the capacity of psychiatric and behavioral symptoms to reduce quality of life, we had been unable to identify any empirical evidence to support this clinical impression in a thorough literature review. The parallel validation of Dementia Care Mapping (DCM), predominantly a practice development tool, as an observational measure of well-being/quality of life (Kitwood and Bredin, 1997; Fossey et al., 2002) provided an excellent opportunity to examine this issue in a care home setting. The study focused on 209 people with dementia living in residential and nursing home care in north-east England in the U.K., who received a detailed assessment of BPSD, function and cognition. A DCM evaluation was completed for 112 of these individuals, providing a detailed observational measure of well-being, activities and social withdrawal as indices of quality of life over a six-hour daytime period. To our surprise, there was actually no association between well-being, social withdrawal or activities and BPSD. In contrast, there was a significant association between antipsychotic medication and reduced well-being, social withdrawal and activities respectively, even after controlling for the severity of behavioral disturbance. Using an arbitrary definition of “ill-being”, defined as a well-being score of less than zero, 5% of people not taking antipsychotics, 10% of people taking atypical antipsychotics and 22% of people taking typical antipsychotics were defined as having ill-being. Lower levels of functional ability were also associated with significantly lower well-being, less activities and more social withdrawal. At first this latter finding appears to be contrary to one of the central principles of DCM – namely, that the assessment should be independent of dementia severity. Although high levels of well-being and engagement are possible for people with severe dementia, this probably requires higher staff numbers and a workforce with more specialized skills in order to achieve this.

Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim
Keyword(s):  
Quality Of Life ◽  
Patient Autonomy ◽  
Positive Association ◽  
Well Being ◽  
Negative Association ◽  
Significant Positive Association ◽  
Cross Sectional ◽  
People With Dementia ◽  
Mental Well Being

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

scholarly journals Comparative Study of Burnout in Professional Caregivers of Institutionalized Elderly with Dementia and other Diseases

2011 ◽  
Vol 1 (2) ◽  
pp. 61-70
Author(s):  
Inmaculada Méndez ◽  
Esther Secanilla ◽  
Juan P. Martínez ◽  
Josefa Navarro
Keyword(s):  
Quality Of Life ◽  
Ad Hoc ◽  
Maslach Burnout Inventory ◽  
Well Being ◽  
Measuring Instruments ◽  
Global Approach ◽  
People With Dementia ◽  
Quality Of Patient Care ◽  
Psychoeducational Programs

In a global approach about the need of paying attention to staff working with and for older people with dementia and other diseases in residential care, it is necessary to investigate their emotional well-being to provide strategies to improve their quality of life and therefore their quality of patient care. Professional caregivers of people with dementia and other diseases have specific psycho-sociological problems. They are more prone to stress which can sometimes lead to the “burnout” due to specific functions in the workplace. To define the sample was decided to compare two residential centers of two regions, Murcia and Barcelona. We proceeded to the administration of the following measuring instruments: the scale Maslach Burnout Inventory (MBI) and an ad hoc survey conducted for professional caregivers. Finally, the results offer the possibility of carrying out programs to prevent emotional exhaustion in professional carers, as well as the possibility of designing psychoeducational programs for staff care and even future proactive and reactive interventions.

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