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.

Evaluation of Alzheimer's Australia Vic Memory Lane Cafés

2010 ◽  
Vol 23 (2) ◽  
pp. 246-255 ◽  
Author(s):  
Briony Dow ◽  
Betty Haralambous ◽  
Courtney Hempton ◽  
Susan Hunt ◽  
Diane Calleja
Keyword(s):  
Quality Of Life ◽  
Support Groups ◽  
Social Inclusion ◽  
Service Providers ◽  
Family Members ◽  
Memory Loss ◽  
Well Being ◽  
Human Research Ethics ◽  
People With Dementia

ABSTRACTBackground: This paper describes the evaluation of the Memory Lane Café service in Victoria, Australia. The Alzheimer's Australia Vic Memory Lane Café model aims to provide a social and educational service to people living with dementia and their carers, family members or friends. Dementia is a serious health issue in Australia, with prevalence estimated at 6.5% of people over 65 years of age. Living with dementia has significant social and psychological ramifications, often negatively affecting quality of life. Social support groups can improve quality of life for people living with dementia.Methods: The evaluation included focus groups and surveys of people with dementia and their carers, staff consultation, service provider interviews, and researcher observation. The Melbourne Health Mental Health Human Research Ethics Committee approved the project. Participants included people with dementia (aged 60 to 93 years, previously enrolled in the Alzheimer's Australia Vic's six-week Living With Memory Loss Program), their carers, friends and/or family members, staff working in the Cafés, and service providers with links to the Cafés.Results: This evaluation found that Memory Lane Cafés promote social inclusion, prevent isolation, and improve the social and emotional well-being of attendees. However, Cafés did not meet the needs of all potential attendees.Conclusions: The evaluation recommended that existing Café services be continued and possibilities for extending the Cafés be explored. Based on evaluation outcomes, the Department of Health Victoria is funding four additional pilot programs in café style support services.

scholarly journals The Unforgettables: a chorus for people with dementia with their family members and friends

2018 ◽  
Vol 30 (6) ◽  
pp. 779-789 ◽  
Author(s):  
Mary Sherman Mittelman ◽  
Panayiota Maria Papayannopoulou
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Pilot Study ◽  
Effect Size ◽  
Family Members ◽  
Positive Effects ◽  
Cohen’S D ◽  
People With Dementia ◽  
Cohen's D

Summary/AbstractOur experience evaluating a museum program for people with dementia together with their family members demonstrated benefits for all participants. We hypothesized that participation in a chorus would also have positive effects, giving them an opportunity to share a stimulating and social activity that could improve their quality of life. We inaugurated a chorus for people with dementia and their family caregivers in 2011, which rehearses and performs regularly. Each person with dementia must be accompanied by a friend or family member and must commit to attending all rehearsals and the concert that ensues. A pilot study included a structured assessment, take home questionnaires and focus groups. Analyses of pre-post scores were conducted; effect size was quantified using Cohen's d. Results showed that quality of life and communication with the other member of the dyad improved (Effect size: Cohen's d between 0.32 and 0.72) for people with dementia; quality of life, social support, communication and self-esteem improved (d between 0.29 and 0.68) for caregivers. Most participants stated that benefits included belonging to a group, having a normal activity together and learning new skills. Participants attended rehearsals in spite of harsh weather conditions. The chorus has been rehearsing and performing together for more than 6 years and contributing to its costs. Results of this pilot study suggest that people in the early to middle stage of dementia and their family members and friends can enjoy and learn from rehearsing and performing in concerts that also engage the wider community. It is essential to conduct additional larger studies of the benefits of participating in a chorus, which may include improved quality of life and social support for all, and reduced cognitive decline among people with dementia.

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 “I Know Who I Am; the Real Me, and That Will Come Back”

2017 ◽  
Vol 28 (2) ◽  
pp. 119-140 ◽  
Author(s):  
Tamsin MacBride ◽  
Emma Miller ◽  
Belinda Dewar
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Members ◽  
The Real ◽  
Core Theme ◽  
The Core ◽  
People With Dementia ◽  
Care Systems ◽  
Person With Dementia

Effective support to carers of people with dementia can be critical to maintain quality of life for people with dementia and their families and to sustain the future of health and care systems. Qualitative interviews were undertaken with 14 carers of people with dementia across Scotland, and the data were analysed to identify the outcomes important to the carers. The importance of relationships emerged as the core theme, including relationship with the person with dementia, family members, other carers, and professionals. Although not evident in the literature, the authors noted that the concept of self-relationship was important to carers in the context of changing relationships with others. A multilayered approach to understanding relationships, and an approach to engagement that enables carers to define and express their priorities, is necessary to fit with the relational nature of care.

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

scholarly journals Making a university community more dementia friendly through participation in an intergenerational choir

Dementia ◽  
2018 ◽  
Vol 18 (7-8) ◽  
pp. 2556-2575 ◽  
Author(s):  
Phyllis Braudy Harris ◽  
Cynthia Anne Caporella
Keyword(s):  
Quality Of Life ◽  
College Students ◽  
Young Adults ◽  
Focus Group ◽  
Lived Experience ◽  
Family Members ◽  
Social Connections ◽  
The People ◽  
People With Dementia

A dementia friendly community is one that is informed about dementia, respectful and inclusive of people with dementia and their families, provides support, promotes empowerment, and fosters quality of life. This study presents data from four cohorts of undergraduate college students and people with dementia and their family members, using an intergenerational choir as the process through which to begin to create a dementia friendly community. This was accomplished by breaking down the stereotypes and misunderstandings that young adults have about people with dementia, thus allowing their commonalities and the strengths of the people living with dementia to become more visible. Data were gathered for each cohort of students through semi-structured open-ended questions on attitudes about dementia and experiences in the choir, collected at three points over 10 weeks of rehearsals. Data about their experiences in the choir were collected from each cohort of people with dementia and their family members through a focus group. Results across all four cohorts showed in the students: changed attitudes, increased understanding about dementia and the lived experience, reduced dementia stigma, and the development of meaningful social connections. People with dementia and their family members expressed feelings of being part of a community.

scholarly journals Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic

2013 ◽  
Vol 2013 ◽  
pp. 1-6
Author(s):  
Brandalyn C. Riedel ◽  
Jamie K. Ducharme ◽  
David S. Geldmacher
Keyword(s):  
Quality Of Life ◽  
Treatment Success ◽  
Family Members ◽  
Family Quality Of Life ◽  
Care Needs ◽  
Family Unit ◽  
Dementia Patients ◽  
People With Dementia ◽  
The Family

Objective. To understand who dementia patients identify as their family and how dementia affects family life.Background. Dementia care is often delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life.Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the affected person and the family. Responses were categorized as focused on an individual’s needs or the family’s needs.Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family-focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response.Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that affects life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia.

scholarly journals Rehabilitative Support for Persons with Dementia and Their Families to Acquire Self-Management Attitude and Improve Social Cognition and Sense of Cognitive Empathy

Geriatrics ◽  
2019 ◽  
Vol 4 (1) ◽  
pp. 26 ◽  
Author(s):  
Yohko Maki ◽  
Hideyuki Hattori
Keyword(s):  
Quality Of Life ◽  
Social Cognition ◽  
Continuous Process ◽  
Family Members ◽  
Cognitive Empathy ◽  
Intervention Measures ◽  
People With Dementia ◽  
Core Problem ◽  
Dementia Education

People with dementia are often inevitably confronted with various difficulties with social interaction and communication, which is a core problem that can be improved with rehabilitative support, thus improving their quality of life. The authors propose rehabilitative support using communication via activities; co-beneficial relationship-based rehabilitation, which emphasizes the following 3 points: support for people with dementia to improve social reserves, which is the ability to overcome the decline in social cognition; support for family members for improving cognitive empathy, which is the ability to analyze the background of others’ behaviors and speech; and the involvement of the practitioner to supervise and empower them. The process of intervention is as follows: (1) selecting activities for collaboration; (2) sharing information on their current situation including declined abilities; (3) enhancing cognitive empathy through dementia education; (4) designing the intervention measures together; and (5) practice and feedback. Living with dementia involves a continuous process of coping with various challenges in daily living, however, the process of effectively managing these challenges is one of the ways to improve the quality of life of people with dementia and their family members.

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