scholarly journals 6 The hidden co-worker: research revealing unmet support needs in carers of people with dementia who receive cancer treatment

Author(s):  
J Hopkinson ◽  
M King ◽  
R Milton
2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld

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.


Author(s):  
Hirotoshi Yamamoto ◽  
Yasuyoshi Yokokohji ◽  
Hajime Takechi

In the area of welfare engineering, various technological research and developmental efforts have been made to support people with dementia. However, it is not clear if these efforts are based on the real needs of these people. When providing support to people with dementia, it is essential to know exactly what their needs are. Nevertheless, it is not easy to obtain appropriate answers from these people by simply asking “How can we help you?” In addition, it is unlikely that answers from those people will cover all of their support needs. In this chapter, a new method based on the “Person-Centered Care” concept is proposed for eliciting the support needs from, and determining their priorities for people with early-stage dementia who are eager to maintain their social living despite coping with various difficulties. First, all of the actual and potential tasks of social living in their daily life are determined. Support needs are then extracted systematically from those tasks by paying attention to what factors are bothering these people or are confusing to them rather than directly asking the individuals what type of support they want or need. Finally, the support needs are prioritized by taking the degree of the individuals’ confusion and task frequency into consideration. When interviewing people with dementia, special care must be taken to ensure that the individuals who have memory impairment are not overburdened . In the proposed method, visual materials such as cards and boards with illustrations are utilized so that people with dementia can answer questions more easily. Some interviews were conducted based on the proposed method to confirm that support needs can be determined systematically from people with early-stage dementia.


2019 ◽  
Vol 49 (2) ◽  
pp. 171-174 ◽  
Author(s):  
Marie Poole ◽  
Nuala Davis ◽  
Louise Robinson

Abstract As the ageing population grows globally, the need for informal care—usually provided by family and friends—will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC—dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support.


2016 ◽  
Vol 25 (9) ◽  
pp. 1079-1084 ◽  
Author(s):  
Nick Courtier ◽  
Rebecca Milton ◽  
Amanda King ◽  
Rosie Tope ◽  
Susan Morgan ◽  
...  

2018 ◽  
Vol 40 (5) ◽  
pp. 944-965 ◽  
Author(s):  
Lorna McWilliams ◽  
Caroline Swarbrick ◽  
Janelle Yorke ◽  
Lorraine Burgess ◽  
Carole Farrell ◽  
...  

AbstractThe risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.


Author(s):  
Alys Wyn Griffiths ◽  
Laura Ashley ◽  
Rachael Kelley ◽  
Fiona Cowdell ◽  
Michelle Collinson ◽  
...  

BMJ Open ◽  
2021 ◽  
Vol 11 (12) ◽  
pp. e052608
Author(s):  
Victoria Hodges ◽  
Catherine Hynes ◽  
Samuel Lassa ◽  
Caroline Mitchell

BackgroundThere are 50 million dementia sufferers worldwide. Decisions about healthcare often need to be made when the person with dementia lacks capacity to do so.Understanding the support needs of carers acting as proxy healthcare decision-makers will be vital in improving the decision-making process for people with dementia and addressing the holistic needs of carers.ObjectiveThe objective of this study was to review the existing literature on the support needs of carers acting as proxy healthcare decision-makers for people with dementia.DesignA qualitative systematic review protocol was published on PROSPERO. The Critical Appraisal Skills Programme checklist was used to appraise study quality. A meta-ethnographic synthesis was performed to develop third-order constructs.Data sourcesA search was conducted using three online databases (MEDLINE, CINAHL and PsycINFO).Eligibility criteriaFifteen studies met the inclusion criteria: primary qualitative research involving carers of people with dementia who had been involved in making proxy healthcare decisions.Data extraction and synthesisTwo independent researchers conducted validity assessments for each paper selected for inclusion, and discrepancies were resolved by discussions with a third reviewer. Nvivo software was used and conceptual findings from study papers lead to interpretations of findings by the team.ResultsFrom the 15 papers included in the study, three main domains arose from the meta-ethnography; informational, practical and emotional. Informational support needs included information about dementia itself and the anticipated disease trajectory. Practical needs included continuity of care, person-centred care and the use of legal frameworks.Emotional support included recognising the guilt that healthcare decisions can provoke and the importance of providing guidance in an empathic manner.ConclusionsThis meta-ethnography highlights opportunities for healthcare professionals and policymakers to improve experiences of carers making proxy healthcare decisions for people with dementia.PROSPERO registration numberCRD42020124485.


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