scholarly journals Balancing care demands and personal needs: A typology on the reconciliation of informal dementia care with personal life based on narrative interviews

Dementia ◽  
2021 ◽  
pp. 147130122110083
Author(s):  
Sophie Gottschalk ◽  
Lydia Neubert ◽  
Hans-Helmut König ◽  
Christian Brettschneider
Keyword(s):  
Informal Care ◽  
Dementia Care ◽  
Personal Life ◽  
Family Carers ◽  
Narrative Interviews ◽  
Documentary Method ◽  
People With Dementia ◽  
Personal Needs ◽  
Person With Dementia ◽  
Care Demands

Finding a balance between care and personal needs is often challenging for individuals caring for a person with dementia. The present study aimed to understand how primary and secondary family carers of people with dementia perceive the reconciliation of informal care and their personal life throughout the course of care. Narrative interviews with 14 carers ( n=10 female, mean age: 48.79) from seven care networks were conducted. The interviews were analysed using the documentary method. The result was a relational type formation which comprises different process types: ‘Respect your boundaries, stay calm, but plan ahead’, ‘Acting strategic is making it work’, ‘Reflect the situation, deal with it, and pull it through’ and ‘There is no alternative, you have to live with it’. This typology was based on two related dimensions: the way people negotiate their own needs against the demands of care (prospective, strategic, reflective and limited) and the resulting attitudes towards reconciling informal care and personal life (accepting, withstanding and enduring). The results yield implications for practice, such as considering individual needs and the care network to provide effective support and promoting the importance of self-care behaviours to achieve a balance between care and personal life.

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.

scholarly journals The extended palliative phase of dementia – An integrative literature review

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 108-134 ◽  
Author(s):  
Elizabeth Hanson ◽  
Amanda Hellström ◽  
Åsa Sandvide ◽  
Graham A Jackson ◽  
Rhoda MacRae ◽  
...  
Keyword(s):  
Literature Review ◽  
End Of Life Care ◽  
Dementia Care ◽  
Educational Opportunities ◽  
Advanced Dementia ◽  
Subsequent Work ◽  
People With Dementia ◽  
Definition Of ◽  
Palliative Phase ◽  
Person With Dementia

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, ‘Dementia Palliare’.

A study of the effectiveness of MP3 players to support family carers of people living with dementia at home

2014 ◽  
Vol 27 (3) ◽  
pp. 471-479 ◽  
Author(s):  
Virginia Lewis ◽  
Michael Bauer ◽  
Margaret Winbolt ◽  
Carol Chenco ◽  
Francine Hanley
Keyword(s):  
Mental Health ◽  
Low Cost ◽  
Family Carers ◽  
Health And Wellbeing ◽  
People With Dementia ◽  
Mp3 Players ◽  
Mp3 Player ◽  
High Level ◽  
And Coping ◽  
Person With Dementia

ABSTRACTBackground:Music can be therapeutic to people with dementia; however, little is known about its effect on the family carers. This project aimed to (1) assess the effects of MP3 player use by a person with dementia on caregivers’ mental health and wellbeing, including their self-care and health-promoting behavior and (2) determine whether MP3 player use increases caregivers’ self-reported capacity to cope with their role.Methods:A pre–post quantitative and qualitative design was used. Carers completed a survey prior to commencing and four weeks after using the player. The survey included validated measures to assess the level of stress and coping among carers. Carers also kept a diary of the way they used the MP3 player. Half of the carers were interviewed about their experiences at the end of the study.Results:Of 59 people who started using the MP3 player, 51 carers completed the four-week study period and surveys. Use of the MP3 player significantly decreased psychological distress, significantly improved the mental health and wellbeing of carers, significantly increased caregiver self-efficacy to manage symptoms of dementia, and was reported to provide valued respite from the high level of vigilance required for caring for a person with dementia.Conclusion:An MP3 player loaded with music can be a low cost and relatively simple and effective additional strategy to support families caring for people with dementia in the community.

scholarly journals The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

2020 ◽  
Author(s):  
Aida Suárez-González ◽  
Emma Harding ◽  
Nikki Zimmerman ◽  
Zoe Hoare ◽  
Emilie Brotherhood ◽  
...  
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Care Homes ◽  
Cognitive Symptoms ◽  
Family Carers ◽  
People With Dementia ◽  
The Uk ◽  
Low Prevalence ◽  
Person With Dementia ◽  
The Impact

AbstractIntroductionThe public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.ObjectiveWe explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.MethodAn online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.Results184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.ConclusionsPeople with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.Key points70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.

Ethical aspects in dementia care - The use of psychosocial interventions

2020 ◽  
pp. 096973302095212
Author(s):  
Benedicte Sørensen Strøm ◽  
Knut Engedal
Keyword(s):  
Psychosocial Interventions ◽  
Well Being ◽  
Dementia Care ◽  
Ethical Challenge ◽  
Ethical Aspects ◽  
Respect For Autonomy ◽  
Daily Care ◽  
People With Dementia ◽  
Clinical Practise ◽  
Person With Dementia

The use of psychosocial interventions for people with dementia is common and recommended because they focus on the underlying problem and well-being of the person. The promotion of well-being is a relevant dimension in person-centred care, where the aim is to confirm the person’s ‘personhood’. Most literature about ethics in dementia care instructs us on how and when to include people with dementia in our research. Little is written about the ethical aspects regarding the use of psychosocial interventions in daily care. In clinical practise, several challenges arise about the use of psychosocial interventions. Those include questions about the person’s ability to participate in decision-making and how we know what is best for them. Furthermore, we must consider what kinds of psychosocial interventions are best for everybody, or if intervention causes discomfort for the person. This article emphasizes the necessity to consider the ethical aspects of the implementation of psychosocial interventions while taking into consideration the persons individual needs. A particular ethical challenge arises when a person with dementia is unable to express themselves verbally. Therefore, it is essential that the staff know the history and preferences of each person with dementia. The ethical aspects of psychosocial interventions for people with dementia will be discussed using Beauchamp and Childress four ethical principles: respect for autonomy, beneficence, non-maleficence and justice. The person-centred approach proposed by Kitwood’s and Brooker.

Development of Support Networks in Informal Dementia Care: Guided, Organic, and Chance Routes through Support

2012 ◽  
Vol 31 (4) ◽  
pp. 445-455 ◽  
Author(s):  
Valerie Egdell
Keyword(s):  
Informal Care ◽  
Informal Caregiver ◽  
Dementia Care ◽  
Qualitative Approach ◽  
Support Networks ◽  
Health Conditions ◽  
People With Dementia ◽  
Aging Populations

ABSTRACTIncreasing knowledge about factors that shape the development of care networks for people with dementia is imperative in countries with aging populations that are relying increasingly on informal care. This study used a qualitative approach to identify the complex routes through support taken by informal caregivers for people with dementia in the development of their care networks. Interview data were collected from 13 caregivers. Three routes through support were identified: guided routes, organic routes, and chance routes. This article’s principal argument is that these routes are the outcomes not only of the resources that caregivers draw upon, but also of their varying expectations regarding the role of the informal caregiver. The identification of the three routes through support provides a potentially valuable framework for examining the experiences of caregivers for individuals with other long-term health conditions.

Hanging on to Some Autonomy in Decisionmaking: How do Spouse Carers Support this?

Dementia ◽  
2016 ◽  
Vol 18 (4) ◽  
pp. 1219-1236 ◽  
Author(s):  
Deirdre Fetherstonhaugh ◽  
Jo-Anne Rayner ◽  
Laura Tarzia
Keyword(s):  
Decision Making ◽  
Informal Care ◽  
Face To Face ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Person With Dementia

In Australia, the majority of people with dementia live in the community with informal care provided by family, commonly a spouse. A diagnosis of dementia is a threat to one’s personhood and is often accompanied by perceptions of future dependency, which will involve the inability to carry out conventional roles and complete everyday tasks including making decisions. Being able to make decisions, however, is part of being a ‘person’ and it is through relationships that personhood is defined and constructed. In face-to-face interviews with seven couples (a carer and person with dementia dyad) and two spouse carers, this study explored why, and how, spouse carers support continued involvement in decision-making for people with dementia. The findings highlight the importance of loving and respectful relationships in the development of strategies to support continued decision-making for people with dementia.

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.

Risk factors related to the admission of people with dementia into a long-term care institution in Spain: an explorative study

2016 ◽  
Vol 38 (1) ◽  
pp. 192-211
Author(s):  
ESTER RISCO ◽  
ESTHER CABRERA ◽  
M. CARME ALVIRA ◽  
MARTA FARRÉ ◽  
SUSANA MIGUEL ◽  
...  
Keyword(s):  
Risk Factors ◽  
Informal Care ◽  
Health Care Professionals ◽  
Long Term Care ◽  
Term Care ◽  
Care Institution ◽  
Care Givers ◽  
People With Dementia ◽  
Person With Dementia

ABSTRACTRisk factors associated with admission of people with dementia to long-term care institutions need to be identified to support health-care professionals in dementia care at home. An explorative study, combining quantitative and qualitative data collection methods, was performed in people with dementia in Spain. The sample, consisting of people with dementia receiving formal care from health-care professionals but at risk of institutionalisation, and their informal care-givers; and people with dementia recently admitted to a long-term care institution, and their informal care-givers, was interviewed between November 2010 and April 2012. Perceived reasons for admission were determined through an open-ended question put to both groups. Presumed risk factors were collected with validated questionnaires and analysed using bivariate analysis. A total of 287 people with dementia and informal care-givers were studied. Reasons given by the institutionalised group were mostly related to the level of dependency of the person with dementia. People recently admitted to a long-term care institution had more cognitive impairment, a greater degree of dependency and poorer quality of life than those still living at home. Home-care services in Spain need to develop or improve interventions based on the risk factors identified in this study: informal care-giver profile, high cognitive impairment, high level of dependency and the poor quality of life of the person with dementia.

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