scholarly journals The practice and ethics of dementia care

2015 ◽  
Vol 27 (10) ◽  
pp. 1579-1581
Author(s):  
Henry Brodaty
Keyword(s):  
Quality Of Life ◽  
Service Delivery ◽  
End Of Life ◽  
Family Caregivers ◽  
Dementia Care ◽  
Policy Makers ◽  
People With Dementia ◽  
Dementia Research

The focus in dementia research on discovery of cause and cure often leaves the care part of the triad hidden from the spotlight. While clinicians, caregivers, and policy makers eagerly await these scientific developments, daily they face challenges in striving best for quality of life for people with dementia and their family caregivers. This issue of the Journal addresses six topics: three relate to service delivery – at assessment, in the community and at end of life; and one each focus on ethics, driving and suicidality.

scholarly journals Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review

2019 ◽  
Vol 97 (1) ◽  
pp. 113-175 ◽  
Author(s):  
CATHERINE J. EVANS ◽  
LUCY ISON ◽  
CLARE ELLIS‐SMITH ◽  
CAROLINE NICHOLSON ◽  
ALESSIA COSTA ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Service Delivery ◽  
Older People ◽  
End Of Life ◽  
Rapid Review ◽  
Service Delivery Models ◽  
Delivery Models

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.

scholarly journals Cross-cultural adaptation of the German version of the Quality of Life in Alzheimer's Disease scale - Nursing Home version (QoL-AD NH)

2016 ◽  
Vol 28 (8) ◽  
pp. 1399-1400 ◽  
Author(s):  
Martin Nikolaus Dichter ◽  
Eva-Maria Wolschon ◽  
Gabriele Meyer ◽  
Sascha Köpke
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Community Dwelling ◽  
Positive Effects ◽  
People With Dementia ◽  
The Us ◽  
Dementia Research ◽  
Almost All

Dementia is a chronic and currently incurable syndrome. Therefore, quality of life (QoL) is a major goal when caring for people with dementia (Gibson et al., 2010) and a major outcome in dementia research (Moniz-Cook et al., 2008). The measurement of QoL, especially proxy-rating, is challenging because of the proxy-perspective (Pickard and Knight, 2005), reliability (Dichter et al., 2016), validity (O'Rourke et al., 2015), and responsiveness (Perales et al., 2013). Probably due to these challenges, it has not been possible to show positive effects for QoL in almost all non-pharmacological interventions for people with dementia (Cooper et al., 2012). One recommended (Moniz-Cook et al., 2008) and frequently used instrument is the Quality of Life in Alzheimer's Disease scale (QoL-AD), which was originally developed in the US for community-dwelling people with dementia. The QoL-AD consists of 13 items based on a 4-point Likert scale ranging from “1”=poor to “4”=excellent (Logsdon et al., 1999). The original instrument has been adapted for people living in nursing homes (NH) by Edelmann et al. (2005).

Management of dementia

2020 ◽  
pp. 557-570
Author(s):  
Sarah Cullum ◽  
Tesema Taye
Keyword(s):  
Quality Of Life ◽  
Social Care ◽  
Ethical Issues ◽  
Family Members ◽  
Dementia Care ◽  
Psychosocial Aspects ◽  
People With Dementia

The cornerstone of dementia care is social care, and much of this is delivered by the families and carers of people with dementia. The management of dementia should therefore focus on supporting and developing the care provided by family members and carers in the community, because their education and enablement will help to optimize the quality of life for all people living with dementia. This chapter concentrates on the assessment and management of people with dementia in the early and later stages of the disorder. At both stages we consider engagement, autonomy, respect, protection, and ethical issues, as well as describing the clinical and psychosocial aspects of treatment. The emphasis is on the broader principles of management, which apply to people with dementia of any aetiology, their families, carers, and communities, and take into account the different settings in which they may present.

Norway

2019 ◽  
pp. 211-218
Author(s):  
Knut Engedal
Keyword(s):  
Quality Of Life ◽  
Health Services ◽  
Welfare State ◽  
Family Caregivers ◽  
Residential Care ◽  
Healthcare Professionals ◽  
Tax System ◽  
People With Dementia ◽  
At Home

Norway has 5 million inhabitants, of whom 200,000 are aged above 80 years. The country is a welfare state, with a tax system covering most health services for its citizens. It is estimated that 78,000 people in Norway suffer from dementia, of whom 60% live at home and the remainder in residential care. In 2007, the first National Dementia Plan was launched (2007–2015), and the second in 2016 (2016–2020). The main goals of the two Plans are to develop services across the country to improve the care and quality of life for all people with dementia and their family caregivers, as well as increase the knowledge of dementia among healthcare professionals. In addition, the Plans also aim to improve awareness of dementia in society as a whole and to develop and implement measures to help create a more dementia-friendly society.

Quality of life and the associated factors among family caregivers of older people with dementia in Thailand

2020 ◽  
Vol 22 (4) ◽  
pp. 913-920
Author(s):  
Linchong Pothiban ◽  
Chomphoonut Srirat ◽  
Nahathai Wongpakaran ◽  
Orawan Pankong
Keyword(s):  
Quality Of Life ◽  
Older People ◽  
Family Caregivers ◽  
Associated Factors ◽  
People With Dementia

Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers

2013 ◽  
Vol 25 (7) ◽  
pp. 1097-1105 ◽  
Author(s):  
Maria Fernanda Barroso Sousa ◽  
Raquel Luiza Santos ◽  
Cynthia Arcoverde ◽  
Pedro Simões ◽  
Tatiana Belfort ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Depressive Symptoms ◽  
Family Caregivers ◽  
Linear Regression Analysis ◽  
Cognitive Factors ◽  
People With Dementia ◽  
Significant Difference

ABSTRACTBackground: The validity of self-reported quality-of-life (QoL) assessments of people with dementia (PWD) is a critical issue. We designed this study to determine the non-cognitive factors that are associated with self-reported QoL and PWD QoL as rated by family caregivers.Methods: Using a cross-sectional study, we assessed QoL of 41 people with mild Alzheimer's disease (AD). The individuals with AD and their family caregivers completed the Quality of Life in Alzheimer's Disease Scale (QoL-AD), the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (FAQ), and the Zarit Burden Interview (ZBI). Univariate and multivariate regression analyses were conducted to examine the contribution of the various cofactors.Results: We observed a significant difference (t = 3.292, p < 0.01, d = 0.727) in the QoL measures of PWD after comparing self-reported assessments with the assessments of family caregivers. Linear regression analysis demonstrated that awareness of disease was related to PWD QoL-AD scores. Both the education levels of family caregivers and the depressive symptoms in PWD were related to the family caregivers’ ratings of PWD QoL.Conclusions: The difference between self-reported QoL and family caregivers’ ratings of QoL in people with mild dementia indicated that cognitive impairment was not the primary factor that accounted for the differences in the QoL assessments. Our findings suggested that non-cognitive factors, such as awareness of disease and depressive symptoms, played an important role in the differences between the self-reported AD QoL ratings and the caregivers’ AD QoL ratings. A major implication is that discrete measures such as cognition or level of function are likely to miss important factors that influence QoL.

scholarly journals Assessing the need for a question prompt list that encourages end-of-life discussions between patients with advanced cancer and their physicians: A focus group interview study

2021 ◽  
pp. 1-6
Author(s):  
Ayako Sato ◽  
Maiko Fujimori ◽  
Yuki Shirai ◽  
Shino Umezawa ◽  
Masanori Mori ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Focus Group ◽  
Cancer Treatment ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Question Prompt List ◽  
Question Prompt ◽  
Active Cancer

Abstract Objective Early integration of palliative and cancer care improves the quality of life and is facilitated by discussions about the end of life after cessation of active cancer treatment between patients with advanced cancer and their physicians. However, both patients and physicians find end-of-life discussions challenging. The aim of this study was to assess the need for a question prompt list (QPL) that encourages end-of-life discussions between patients with advanced cancer and their physicians. Methods Focus group interviews (FGIs) were conducted with 18 participants comprising 5 pancreatic cancer patients, 3 family caregivers, 4 bereaved family members, and 6 physicians. Three themes were discussed: question items that should be included in the QPL that encourages end-of-life discussions with patients, family caregivers, and physicians after cessation of active cancer treatment; when the QPL should be provided; and who should provide the QPL. Each interview was audio-recorded, and content analysis was performed. Results The following 9 categories, with 57 question items, emerged from the FGIs: (1) preparing for the end of life, (2) treatment decision-making, (3) current and future quality of life, (4) current and future symptom management, (5) information on the transition to palliative care services, (6) coping with cancer, (7) caregivers’ role, (8) psychological care, and (9) continuity of cancer care. Participants felt that the physician in charge of the patient's care and other medical staff should provide the QPL early during active cancer treatment. Significance of results Data were collected to develop a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.

Developing dementia-friendly pharmacies in Austria: a health promotion approach

2019 ◽  
Vol 35 (4) ◽  
pp. 702-713 ◽  
Author(s):  
Petra Plunger ◽  
Katharina Heimerl ◽  
Verena C Tatzer ◽  
Georg Zepke ◽  
Monika Finsterwald ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Promotion ◽  
Community Pharmacy ◽  
Organizational Development ◽  
Dementia Care ◽  
Small Scale ◽  
People With Dementia ◽  
Accessible Information ◽  
Participatory Health Research

Abstract The need for integrated, accessible and person-centred care for people with dementia to foster quality of life and facilitate life in the community has been voiced by health policy. Pharmacies have the potential to provide easily accessible information and support for people with dementia, caregivers and the public. The ‘Dementia-friendly Pharmacy’ programme aimed at re-orienting community pharmacy in Austria, focusing on stronger inclusion of professional counselling into core services. It followed principles of health promotion and person-centred care, aiming at empowering all actors involved, and at fostering quality of life. Methodologically, the programme was based on participatory health research, thus involving all relevant actors and consolidating their perspectives on issues related to dementia care. In the course of the programme, a workshop series covering topics relevant for dementia care in community pharmacy, as well as prototypes for small-scale projects were developed, and measures were taken for securing sustainability. Findings related to programme development and implementation encompass pharmacy staff’s motivation to participate in the programme, counselling knowledge and skills development, experience with building community partnerships and cross-organizational development and sustainability. Furthermore, effectiveness of the programme has been established. These findings are discussed against the background of re-orienting pharmacies.

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