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 An evaluation of group reminiscence arts sessions for people with dementia living in care homes

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 805-821 ◽  
Author(s):  
Frank Keating ◽  
Laura Cole ◽  
Robert Grant
Keyword(s):  
Quality Of Life ◽  
Social Inclusion ◽  
Care Home ◽  
Well Being ◽  
Care Homes ◽  
Primary Data ◽  
Evaluation Team ◽  
People With Dementia ◽  
Group Reminiscence

Dementia has been identified as one of the major challenges in the 21st Century. The detrimental effects of dementia can jeopardise personhood, thus person-centred interventions including reminiscence and arts practice have been recommended as tools to promote social inclusion and improve the quality of life. This study aimed to evaluate the effectiveness of group reminiscence arts sessions for people living with dementia in care homes (residential and nursing homes) using a comparative and time series design to collect data on quality of life. The intervention was conducted in six care homes in London over a period of 24 weeks and compared with six care homes not receiving the intervention (control). Dementia Care Mapping was used as the primary data collection instrument to measure positive behaviours and rate quality of life before, during and after group reminiscence arts sessions. The evaluation team observed the sessions at three-weekly intervals. Statistical modelling found that positive behaviours and quality of life of care home residents participating in group reminiscence arts sessions increased over the 24-week period. Well-being increased sharply during each session and plateaued at 50 minutes with a sustained positive effect after the sessions. On a longer timescale, well-being and quality of life increased slowly and steadily from one session to the next. The findings were statistically significant ( p < 0.001). The study concludes that group reminiscence arts sessions can have a positive and sustained impact on the quality of life of people with dementia. However, the evidence on the sustainability of the effect over time remains unknown. More research is needed to assess in much greater depth the association between quality of life and group reminiscence arts sessions.

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 Quality of Life: Changes in Self-Perception in People with down Syndrome as a Result of Being Part of a Football/Soccer Team. Self-Reports and External Reports

2021 ◽  
Vol 11 (2) ◽  
pp. 226
Author(s):  
Rocío Camacho ◽  
Cristina Castejón-Riber ◽  
Francisco Requena ◽  
Julio Camacho ◽  
Begoña Escribano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Down Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Evaluation Process ◽  
Well Being ◽  
Self Perception ◽  
Football Team ◽  
Soccer Team

The hypothesis posed was whether being part of a football/soccer team influenced the quality of life (QL) of the people who participated in it since their perception of themselves is enhanced by factors, such as self-determination, social inclusion, emotional well-being, physical well-being, material well-being, rights, personal development, and internal relationships. The objective was to evaluate the QL of people with Down Syndrome (DS) using their self-perception (n = 39) and the perception of the informants (family members, teachers) (n = 39). The KidsLife-Down Scale, with a few modifications, was used. In general, differences of opinion between the subgroups of participants with DS and informants showed that results were higher in terms of perception for participants in the DS subgroup. Scores for all variables were higher for those participants with DS who said they did engage in practicing competitive football/soccer. Although the perception of informants provides a great deal of information regarding the QL of participants with DS, participants with DS should also be involved in the evaluation process and their self-perceptions taken into account. It is not participating in a football team that causes the conclusions of the study, but training (which includes the friendly matches that are played), the cause correlated with the improvements detected in the athlete’s DS.

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.

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 Co-Design of Social Impact Domains with the Huntington’s Disease Community

Disabilities ◽  
2021 ◽  
Vol 1 (2) ◽  
pp. 116-131
Author(s):  
Natasha Layton ◽  
Natasha Brusco ◽  
Tammy Gardner ◽  
Libby Callaway
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Design Process ◽  
Social Life ◽  
Social Inclusion ◽  
Social Impact ◽  
Service Providers ◽  
The Social

Background: For people living with or affected by Huntington’s Disease (HD) to experience a good quality of life, tailored support is required to meet physical, cognitive-behavioral, psychological, and social support needs. Substantial service and knowledge gaps regarding HD exist across support providers and service systems. Measuring unmet needs and what quality of life looks like is a fundamental step required to determine the social impact of service investment and provision. The objectives of this study were to validate and map a draft set of HD Social Impact Domains (HD-SID) against existing national and international outcome frameworks; and evaluate and finalize the HD-SID set using a co-design approach with people with lived experience of, and expertise in, HD. Methods: This research used a qualitative co-design process, with 39 participants across four stakeholder groups (people who were HD gene-positive, gene-negative family members, academics, peak organizations, and service providers) to: (i) map and verify the social life areas impacted by HD; (ii) undertake a rigorous three-phased, qualitative process to critically evaluate the draft HD-SID; and (iii) seek feedback on and endorsement of the HD-SID through this co-design process, with a final set of HD-SID identified. Results: Endorsed HD-SID comprised risks and safety (including housing stability, and economic sustainability) and social inclusion (including health and symptom management, physical wellbeing, emotional wellbeing, and building resilient relationships). Conclusions: Effective measurement of the impacts and outcomes for people with HD is informed by both extant measures and an understanding of the specific population needs. This qualitative co-design research demonstrates that HD-SID resonate with the HD community.

scholarly journals From the First Visit On: Information Technology and Communication

2013 ◽  
Vol 9 (3) ◽  
pp. 152-154 ◽  
Author(s):  
J. Russell Hoverman
Keyword(s):  
Quality Of Life ◽  
Information Technology ◽  
Family Members ◽  
Well Being ◽  
Technology And Communication

The oncology community has found that communication is key to the patient's quality of life, the well-being of family members, hospice enrollment, and costs. The challenge is to make these conversations happen.

Developing dementia: The existential experience of the quality of life with young-onset dementia – A longitudinal case study

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 878-893 ◽  
Author(s):  
Kirsten Thorsen ◽  
Marcia Cristina Nascimento Dourado ◽  
Aud Johannessen
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Single Individual ◽  
Longitudinal Case Study ◽  
Young Onset ◽  
People With Dementia ◽  
Treatment Support ◽  
Young Onset Dementia

BackgroundCognition and the ability to take care of daily activities and oneself gradually declines among people with dementia. Studies are scarce, especially regarding how people with young-onset dementia (YOD) (<65 years) experience the quality of their lives with the progression of dementia. People with dementia living alone face special challenges.AimTo examine the experience of the quality of life with YOD as a single person.MethodThe study presents a longitudinal case study with in-depth interviews exploring the experiences of a person with YOD. Individual interviews were conducted seven times over a period of three years from 2014 to 2017.FindingsWe examined if and how seven themes concerning the quality of life and well-being were fruitful for understanding the experiences of dementia in the everyday life of a single individual. The study explored needs and challenges during the development of dementia, and how the person reacted over time, set in context. The themes significant for well-being are: identity, connectedness, security, autonomy, meaning, growth and joy.ConclusionThe study shows how treatment, support, and services must be individualized when dementia develops in order to support identity, resources and mastering capacity, and promote well-being.

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.

Assistive Technologies and the Carers of People with Dementia

2016 ◽  
Vol 5 (1) ◽  
pp. 45-59
Author(s):  
Sarmishtha Bhattacharyya ◽  
Susan Mary Benbow
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Assistive Technologies ◽  
Narrative Review ◽  
People With Dementia ◽  
Technological Interventions ◽  
Informal Carers

Assistive technologies have a role in supporting both formal and informal carers of people with dementia, and in maintaining the independence, and quality of life of both people with dementia and their carers. The authors report a narrative review of the use of technological interventions to empower the carers of people with dementia, and relate this to a model of ageing well. They argue that this highlights the importance of empowering and connecting with carers in order to increase their participation and connection in the care of their relative/client; and conclude that both empowerment and connection contribute to maintaining autonomy and well-being of both carers and people with dementia. Technological interventions should not be used as alternatives to connection. The emphasis in practice should be on empowering and connecting with both carers and people with dementia.

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