P2-237: A toolkit for assessing the quality of life of people with dementia and improving dementia care

2008 ◽  
Vol 4 ◽  
pp. T441-T441
Author(s):  
Perry Edelman
Author(s):  
Sarah Cullum ◽  
Tesema Taye

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.


2015 ◽  
Vol 27 (10) ◽  
pp. 1579-1581
Author(s):  
Henry Brodaty

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.


2019 ◽  
Vol 35 (4) ◽  
pp. 702-713 ◽  
Author(s):  
Petra Plunger ◽  
Katharina Heimerl ◽  
Verena C Tatzer ◽  
Georg Zepke ◽  
Monika Finsterwald ◽  
...  

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.


2020 ◽  
Vol 27 (1) ◽  
pp. e100064
Author(s):  
David Sanders ◽  
Philip Scott

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.


2021 ◽  
Author(s):  
Sonia Lech ◽  
Julie Lorraine O'Sullivan ◽  
Johanna Drewelies ◽  
Wolfram Herrmann ◽  
Robert Spang ◽  
...  

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


2019 ◽  
Vol 83 (3) ◽  
pp. 145-161
Author(s):  
Hanne Kaae Kristensen ◽  
Hanne Peoples

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.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sonia Lech ◽  
Julie L. O’Sullivan ◽  
Johanna Drewelies ◽  
Wolfram Herrmann ◽  
Robert P. Spang ◽  
...  

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.


GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim

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.


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