scholarly journals The Paradox of Dementia and Driving Cessation: “It’s a Hot Topic,” “Always on the Back Burner”

2020 ◽  
Vol 60 (7) ◽  
pp. 1261-1272
Author(s):  
Elaine Stasiulis ◽  
Mark J Rapoport ◽  
Brintha Sivajohan ◽  
Gary Naglie
Keyword(s):  
Family Carers ◽  
Driving Cessation ◽  
Ongoing Research ◽  
Staff Members ◽  
Social And Emotional ◽  
People With Dementia ◽  
Study Results ◽  
Canadian Provinces ◽  
The Individual ◽  
Context Specific

Abstract Background and Objectives Despite the well-recognized difficulty that persons with dementia and family carers experience in the decision making and transition to nondriving, there are few interventions and resources to support them. As part of our ongoing research to develop a driving cessation toolkit that addresses this gap, we sought to examine the context-specific factors relevant to its effective implementation in settings that support older adults with dementia. Research Design and Methods A qualitative descriptive approach was used to explore the perspectives of Alzheimer Society (AS) staff in their work of supporting people with dementia and family carers within the context of driving cessation. Individual in-depth interviews were conducted with 15 AS staff members in 4 Canadian provinces. Data were examined using interpretative thematic analysis. Results The study results revealed an overarching paradox that despite the importance of driving cessation in people with dementia, it continues to be largely avoided at the individual and system levels. This is explored via the themes of (a) paradox of importance and avoidance identified in AS settings; (b) lack of awareness and understanding about dementia and driving among people with dementia and family carers; (c) distress and avoidance rooted in ongoing system issues; and (d) moving driving cessation to the “front burner.” Discussion and Implications Viewed through the emerging social health paradigm, which focuses on the social and emotional consequences of dementia, our results highlight the urgent need to mobilize our communities, medical education systems, and transportation authorities to finally resolve the dementia and driving cessation paradox.

scholarly journals Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Kate Gridley ◽  
Yvonne Birks ◽  
Gillian Parker
Keyword(s):  
Focus Groups ◽  
Life Story ◽  
Good Practice ◽  
Family Carers ◽  
People With Dementia ◽  
Practice Approach ◽  
Story Work ◽  
The Individual ◽  
Person With Dementia ◽  
Design And Methods

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

Staff views on how to improve mealtimes for elderly people with dementia living at home

Dementia ◽  
2015 ◽  
Vol 16 (7) ◽  
pp. 835-852 ◽  
Author(s):  
Linda Johansson ◽  
Anita Björklund ◽  
Birgitta Sidenvall ◽  
Lennart Christensson
Keyword(s):  
Focus Group Interviews ◽  
Staff Members ◽  
Individualized Care ◽  
People With Dementia ◽  
Everyday Work ◽  
Qualitative Descriptive ◽  
Group Interviews ◽  
The Individual ◽  
Person Centered Approach ◽  
At Home

Dementia commonly leads to difficulties in performing daily activities, which can also often affect the ability to prepare and eat meals. As a result, formal support to maintain good nutritional intake might be needed, but there is a lack of knowledge concerning how to support older persons with dementia living at home. The aim of this study was to explore and describe staff views on how to improve mealtimes for persons with dementia who are still living at home. A qualitative descriptive study was performed and data were collected during 2011–2012 through four focus group interviews with staff working in the homes of persons with dementia. Data were analyzed using inductive content analysis. The participants described several ways to improve mealtimes for persons with dementia and advocated adjustments facilitating the preservation of the persons’ independence. Finding suitable actions calls for knowledge about the person and his/her individual situation. Proposed actions were enabling meals at home, taking over, and moving meals outside of the home. In addition, it was found that, the types of meals served to these persons should be as familiar to the individual as possible. The results of this study indicate the importance of using a person-centered approach and meeting the individual needs when supporting people with dementia in regards to their meals when living at home. Individualized care in the home may be expensive, however, it is fair to say that people who become malnourished and admitted to hospitals is even more costly. Furthermore, sharing and reflecting experiences and knowledge can assist staff to identify ways to manage complex situations. Therefore, the use of refection should be a part of staff members’ everyday work.

scholarly journals Theatre production: a positive metaphor for dementia care-giving

2021 ◽  
pp. 1-16
Author(s):  
Christine Brown Wilson ◽  
Jan Hinson ◽  
Jacinda L. Wilson ◽  
Stephanie Power ◽  
Daniel Hinson ◽  
...  
Keyword(s):  
Central Character ◽  
Family Carers ◽  
Structured Interviews ◽  
Face To Face ◽  
Care Giving ◽  
People With Dementia ◽  
Theatre Production ◽  
Fresh Perspective ◽  
The Individual ◽  
Person With Dementia

Abstract Language can shape and reinforce attitudes and stereotypes about living with dementia. This can happen through use of metaphors. However, common metaphors may not capture the complexity of experience of dementia from the perspective of the individual person or a family carer. This paper presents an alternative metaphor – that of a theatre production – based on the strategies used by carers to support people with dementia to live well in the community. We conducted face-to-face semi-structured interviews with 12 family members caring for someone with dementia in the community in Queensland, Australia. Our aim was to explore the strategies these carers used to provide support. Interview recordings were fully transcribed and thematically analysed. We identified positive care-giving strategies that described multiple roles that carers fulfilled as they felt increasingly responsible for day-to-day decision making. Family carers explained how they supported the person with dementia to remain a central character in their life and continued to support the person to be themselves. To achieve this, family carers embodied roles that we identified as similar to roles in a theatre production: director, stage manager, supporting cast, scriptwriter, and costume designer and wardrobe manager. Our metaphor of a theatre production offers a fresh perspective to explore the experience of informal care-giving in the context of dementia.

Development and pilot testing of the “focus on the person” form: Supporting care transitions for people with dementia

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 2018-2035 ◽  
Author(s):  
Elissa Burton ◽  
Susan Slatyer ◽  
Mary Bronson ◽  
Pam Nichols ◽  
Eleanor Quested ◽  
...  
Keyword(s):  
Care Transitions ◽  
Relevant Information ◽  
Hospital Staff ◽  
Adverse Outcomes ◽  
Mixed Methods Study ◽  
Phase Iii ◽  
Family Carers ◽  
Staff Members ◽  
People With Dementia ◽  
Form Development

When people with dementia are hospitalised, their capacity to communicate with the staff may be limited, compounding risks of distress and other adverse outcomes. Opportunities for carers to share relevant information to inform appropriate person-centred care are also limited. This four-phase mixed methods study aimed to develop an evidence-based family carer–staff communication form, the Focus on the Person form, to address this concern. In Phase I, a literature review plus consultation with clinicians and carers informed form development. In Phase II, the professionally formatted form was piloted by 31 family carers, who were then interviewed about their experiences. These data, combined with data from 30 hospital staff members who participated in Phase III focus groups, led to final, Phase IV, refinements of the form. The form now provides an opportunity for families to inform the person-centred care of people with dementia in hospital, potentially improving outcomes for this vulnerable group.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

Married Life in the Middle Ages, 900-1300

2019 ◽  
Author(s):  
Elisabeth van Houts
Keyword(s):  
Middle Ages ◽  
Married Couple ◽  
Self Determination ◽  
Emotional Life ◽  
Social And Emotional ◽  
Individual Agency ◽  
Married Life ◽  
The Face ◽  
History Of ◽  
The Individual

This book contains an analysis of the experience of married life by men and women in Christian medieval Europe c. 900–1300. The focus will be on the social and emotional life of the married couple rather than on the institutional history of marriage. The book consists of three parts: the first part (Getting Married) is devoted to the process of getting married and wedding celebrations, the second part (Married Life) discusses the married life of lay couples and clergy, their sexuality, and any remarriage, while the third part (Alternative Living) explores concubinage and polygyny as well as the single life in contrast to monogamous sexual unions. Four main themes are central to the book. First, the tension between patriarchal family strategies and the individual family member’s freedom of choice to marry and, if so, to what partner; second, the role played by the married priesthood in their quest to have individual agency and self-determination accepted in their own lives in the face of the growing imposition of clerical celibacy; third, the role played by women in helping society accept some degree of gender equality and self-determination to marry and in shaping the norms for married life incorporating these principles; fourth, the role played by emotion in the establishment of marriage and in married life at a time when sexual and spiritual love feature prominently in medieval literature.

scholarly journals Symptom Cluster-Matching Antidepressant Treatment: A Case Series Pilot Study

2021 ◽  
Vol 14 (6) ◽  
pp. 526
Author(s):  
Sławomir Murawiec ◽  
Marek Krzystanek
Keyword(s):  
Depressive Symptoms ◽  
Pilot Study ◽  
Antidepressant Treatment ◽  
Case Series ◽  
Symptom Cluster ◽  
Study Results ◽  
Cluster Matching ◽  
The Individual ◽  
Meta Analyses ◽  
Effectiveness Studies

Despite treating depression with antidepressants, their effectiveness is often insufficient. Comparative effectiveness studies and meta-analyses show the effectiveness of antidepressants; however, they do not provide clear indications as to the choice of a specific antidepressant. The rational choice of antidepressants may be based on matching their mechanisms of action to the symptomatic profiles of depression, reflecting the heterogeneity of symptoms in different patients. The authors presented a series of cases of patients diagnosed with depression in whom at least one previous antidepressant treatment was shown to be ineffective before drug targeted symptom cluster-matching treatment (SCMT). The presented pilot study shows for the first time the effectiveness of SCMT in the different clusters of depressive symptoms. All the described patients obtained recovery from depressive symptoms after introducing drug-targeted SCMT. Once validated in clinical trials, SCMT might become an effective and rational method of selecting an antidepressant according to the individual profile of depressive symptoms, the mechanism of their formation, and the mechanism of drug action. Although the study results are preliminary, SCMT can be a way to personalize treatment, increasing the likelihood of improvement even in patients who meet criteria for treatment-resistant depression.

scholarly journals Personality and Dementia: an Approach to Differential Profile of the Caregiver

2011 ◽  
Vol 1 (3) ◽  
pp. 85-94
Author(s):  
Elena de Andrés-Jiménez ◽  
Rosa Mª Limiñana-Gras ◽  
Encarna Fernández-Ros
Keyword(s):  
Relevant Information ◽  
Personality Profile ◽  
Family Carers ◽  
Psychological Variables ◽  
People With Dementia ◽  
The Family ◽  
Study Population ◽  
The One ◽  
The Impact

The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

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