Experiences related to quality of life in people with dementia living in institutional settings – A meta-aggregation

2019 ◽  
Vol 83 (3) ◽  
pp. 145-161
Author(s):  
Hanne Kaae Kristensen ◽  
Hanne Peoples
Keyword(s):  
Quality Of Life ◽  
Social Relationships ◽  
Social Connectedness ◽  
Critical Appraisal ◽  
Dementia Care ◽  
Subjective Experiences ◽  
Institutional Settings ◽  
Physical Environments ◽  
People With Dementia

Introduction Within dementia care, there remains a general lack of coherence in evidence-based knowledge on issues of importance for subjective experiences of quality of life in people with dementia. The aim of the meta-aggregation was to investigate experiences related to quality of life in people with dementia living in institutional settings. Method A meta-aggregation inspired by the Joanna Briggs Institute was undertaken. A systematic search was conducted in four databases and additional studies were found in the reference lists of the included studies. Only studies in English, Danish, Swedish, and Norwegian were considered, with publication dates from 2007 to 2018. Findings Ten original qualitative studies were included. Using critical appraisal, methodological quality was assessed. We extracted five main categories: acceptance and adaptation; autonomy; personhood; social connectedness; and activities. Conclusion Significant findings for future occupational therapy in dementia care concerned the importance of coming to terms with the illness and life situation, while being able to experience feelings of autonomy, independence, and personhood. Meaningful social relationships and activities, individualized flexible routines and regulations, and adjusted physical environments with room for privacy were also prioritized in order to achieve high quality of life.

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.

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.

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.

scholarly journals Literature review: technological interventions and their impact on quality of life for people living with dementia

2020 ◽  
Vol 27 (1) ◽  
pp. e100064
Author(s):  
David Sanders ◽  
Philip Scott
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Dementia Care ◽  
Assistive Technologies ◽  
Healthcare Sector ◽  
Supporting Evidence ◽  
Technological Advancement ◽  
People With Dementia ◽  
Person With Dementia

ObjectivesRapid technology-driven innovation in the healthcare sector has led to an increasing ability to effectively respond to health challenges. However, the cognitive challenges faced by a person with dementia exacerbate the difficulty of designing enduring technological dementia care solutions. Despite this, and in the absence of a cure, facilitating well-being and improved quality of life becomes pivotal for those living with dementia and their caregivers. This review aimed to identify and consolidate the provision of technological solutions for dementia care, and how these are perceived to impact the quality of life of a person with dementia.MethodsArticles and journals were identified using keywords including those relating to quality of life, assistive technologies and technology adoption and acceptance. Greater priority was given to resources published after 2010 due to the speed of technological advancement, and peer-reviewed articles were preferred.Results91 resources were identified, with 38 contributing to the final review. In addition to multiple quality of life measurement tools, the literature identified a large variety of solutions that fell into three categories: those used ‘by’, ‘with’ or ‘on’ a person with dementia.ConclusionsThis review concludes that the ‘one size fits all’ approach to many solutions reflects the lack of supporting evidence, negatively impacting trust in their usefulness among caregivers and their subsequent adoption rates. This could be attributed to limited involvement of people with dementia in studies of effectiveness and adoption. Additional research is recommended to further consolidate research on quality of life and to understand the individuality and progression of dementia and its influence on dementia care solutions.

scholarly journals Dementia Care and the Role of Guideline Adherence in Primary Care: Cross-Sectional Findings From the DemTab Study

2021 ◽  
Author(s):  
Sonia Lech ◽  
Julie Lorraine O'Sullivan ◽  
Johanna Drewelies ◽  
Wolfram Herrmann ◽  
Robert Spang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Dementia Care ◽  
Perceived Usefulness ◽  
Trial Registration ◽  
Cross Sectional ◽  
People With Dementia ◽  
Number Of Patients

Abstract Background: General practitioners (GPs) play a key role in the care of people with dementia (PwD). However, the role of the German Dementia Guideline in primary care remains unclear. The main objective of the present study was to examine the role of guideline-based dementia care in general practices.Methods: A cross-sectional analysis of data obtained from the DemTab study was conducted. Descriptive analyses of sociodemographic and clinical characteristics for GPs (N = 28) and PwD (N = 91) were conducted. Adherence to the German Dementia Guideline of GPs was measured at the level of PwD. Linear Mixed Models were used to analyze the associations between adherence to the German Dementia Guideline and GP factors at individual (age, years of experience as a GP, frequency of utilization of guideline, perceived usefulness of guideline) and structural (type of practice, total number of patients seen by a participating GP, and total number of PwD seen by a participating GP) levels as well as between adherence to the German Dementia Guideline and PwD’s quality of life. Results: Self-reported overall adherence of GPs was on average 71% (SD = 19.4, range: 25 – 100). Adherence to specific recommendations varied widely (from 19.2% to 95.3%) and the majority of GPs (79.1%) reported the guideline as only partially or somewhat helpful. Further, we found lower adherence to be significantly associated with higher numbers of patients (γ10 = -5.58, CI = -10.97, -0.19, p = .04). No association between adherence to the guideline and PwD’s quality of life was found (γ10 = -.86, CI = -4.18, 2.47, p = .61). Conclusion: The present study examined the role of adherence to the German Dementia Guideline recommendations in primary care. Overall, GPs reported high levels of adherence. However, major differences across guideline recommendations were found. Findings highlight the importance of guidelines for the provision of care. Dementia guidelines for GPs need to be better tailored and addressed. Further, structural changes such as more time for PwD may contribute to a sustainable change of dementia care in primary care.Trial registration: The DemTab trial was prospectively registered with the ISRCTN registry (Trial registration number: ISRCTN15854413). Registered 01 April 2019, https://doi.org/10.1186/ISRCTN15854413

Do interventions with staff in long-term residential facilities improve quality of care or quality of life for people with dementia? A systematic review of the evidence

2016 ◽  
Vol 28 (12) ◽  
pp. 1935-1936 ◽  
Author(s):  
Nancy A. Hodgson
Keyword(s):  
Patient Outcomes ◽  
Dementia Care ◽  
Dementia Patient ◽  
Dyadic Relationship ◽  
Quality Outcomes ◽  
Formal Caregivers ◽  
Institutional Settings ◽  
People With Dementia

The review by Bird and colleagues (2016), published in this issue of International Psychogeriatrics, is notable for jointly examining the effect of dementia care interventions on both staff and resident quality outcomes. This is an important contribution to improving dementia care because it recognizes the dynamic and dyadic relationship between residents and their caregivers in residential settings. While evidence exists on the dyadic effect of family caregiver intervention on dementia patient outcomes (Gitlin and Hodgson, 2015), less attention has been given to formal caregivers in institutional settings (Dellefield et al., 2015).

scholarly journals The meaning of being young with dementia and living at home

2013 ◽  
Vol 3 (1) ◽  
pp. 3 ◽  
Author(s):  
Dag Rostad ◽  
Ove Hellzén ◽  
Ingela Enmarker
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Lived Experience ◽  
Self Determination ◽  
Subjective Experiences ◽  
Narrative Interviews ◽  
People With Dementia ◽  
Hermeneutic Approach ◽  
At Home

Studies that explore the subjective experiences of younger people with dementia living at home are rare. Therefore, the aim of this study was to gain an understanding of the lived experience of younger persons (<65 years) who lived at home and suffered from earlyonset dementia, and the meanings that might be found in those experiences. The researchers conducted a qualitative study using a phenomenological hermeneutic approach. Data were collected through narrative interviews with four informants. Two men and two women ages 55 to 62 participated. Three of the informants lived with their spouses, and one lived alone, close to his children. The informants’ subjective experiences revealed the following four key themes: entrapment by circumstances, loss of humanity, the preservation of hope and willpower, and the desire to ensure one’s quality of life. These themes provide a deeper understanding of the experiences of younger people with dementia who live at home. The theme of preserving hope and willpower rebuts prejudicial contentions that life with Alzheimer’s syndrome does not have anything more to offer and may be seen as diminishing a patient’s humanity. Patients’ autonomy and self-determination should not be ignored. In all phases of the progression of dementia, the person in charge of giving care to the relative with dementia should be ethically aware of and reflective to the progress of his/her illness.

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