yes / Background: People with dementia and their relatives find decisions about the person with dementia living in a care home difficult. Methods: We interviewed 20 people with dementia or family carers around the time of this decision in order to design a decision-aid. Results: Decision-makers balanced the competing priorities of remaining somewhere familiar, family’s wish they remain at home, reduction of risk and effects on carer’s and person with dementia’s physical health. The person with dementia frequently resented their lack of autonomy as decisions about care home moves were made after insight and judgment were impaired. Family consultation usually helped carers but sometimes exacerbated tensions. Direct professional support was appreciated where it was available. There is a need for healthcare professionals to facilitate these conversations around decision-making and to include more than signposting to other organisations. Conclusions: There is a need for a healthcare professional facilitated decision-aid. This should detail what might change for the person with dementia and their carer, possible resources and alternatives and assist in facilitating discussion with the wider family; further research will develop and test a tool to facilitate decision making about place of care needs.

Yes / Objectives: Longitudinal evidence documenting health conditions in spousal caregivers of people with dementia and whether these influence caregivers’ outcomes is scarce. This study explores type and number of health conditions over two years in caregivers of people with dementia and subgroups based on age, sex, education, hours of care, informant-rated functional ability, neuropsychiatric symptoms, cognition of the person with dementia, and length of diagnosis in the person with dementia. It also explores whether over time the number of health conditions is associated with caregivers’ stress, positive experiences of caregiving, and social networks Methods: Longitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised spousal caregivers (n = 977) of people with dementia. Self-reported health conditions using the Charlson Comorbidity Index, stress, positive experiences of caregiving, and social network were assessed over two years. Mixed effect models were used Results: On average participants had 1.5 health conditions at baseline; increasing to 2.1 conditions over two years. More health conditions were reported by caregivers who were older, had no formal education, provided 10 + hours of care per day, and/or cared for a person with more neuropsychiatric symptoms at baseline. More baseline health conditions were associated with greater stress at baseline but not with stress over time. Over two years, when caregivers’ health conditions increased, their stress increased whereas their social network diminished Discussion: Findings highlight that most caregivers have their own health problems which require management to avoid increased stress and shrinking of social networks / Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) - grant ES/L001853/2. Alzheimer’s Society, grant number 348, AS-PR2-16-001. Sabatini was supported by an ESRC Postdoctoral fellowship (ES/X007766/1).

no / Relatives of people with dementia report that proxy decision-making is difficult and distressing. We systematically reviewed the literature about barriers and facilitators to family carers of people with dementia making proxy decisions, and interventions used to facilitate their decision-making. We searched electronic databases and references of included papers up to February 2014. Two authors independently evaluated study quality using a checklist. We included the 30/104 papers from our search which fitted predetermined criteria and prioritized higher quality papers. Family carers report that proxy decision-making is challenging and can be distressing, especially when decisions are made against the wishes of the care recipient and support from healthcare professionals is lacking. Decision-specific manualized aids have been developed, and while results for those supporting decisions about respite and percutaneous endoscopic gastrostomy (PEG) feeding have shown promising results in pilot trials, no intervention has yet been shown to significantly reduce decisional conflict or carer burden, or increase knowledge in randomized controlled trials; a decision aid for advance care planning increased decisional conflict. We recommend development and testing of decision aids targeting the decisions carers report finding most distressing, including those around where people should live, accessing services, and end of life treatments. Being provided with information to make decisions which have not previously been considered may increase feelings of conflict, suggesting these aids should be carefully targeted.

Yes / Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study we propose that a needs-led approach can provide a useful, novel means of conceptualising the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers’ fulfilment of needs. In this qualitative study we conducted 42 semi-structured interviews with a purposively diverse sample of family carers to generate nuanced contextualised accounts of how caring impacted on carers’ lives. Our inductive thematic analysis focused upon asking: ‘What need is being impacted here?’ in order to generate a needs-led framework for understanding. In this qualitative study we conducted 42 semi-structured interviews with a purposively diverse sample of family carers to generate nuanced contextualised accounts of how caring impacted on carers’ lives. Our inductive thematic analysis focused upon asking: ‘What need is being impacted here?’ in order to generate a needs-led framework for understanding. Nine themes were widely endorsed. Each completed the sentence: “Being a carer impacts on fulfilling my need to/for….”: Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done. These needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positives aspects of caregiving. We recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning. / Medical Research Council and the National Institute for Health Research (NIHR). Grant title: HQLC Dementia Carers Instrument Development: DECIDE (MR/M025179/1) / Research Development Fund Publication Prize Award winner, August 2018.

The thesis focuses on care of clients with Alzheimer's, including the burden of family members and possible options of using services of a day care and a week care centre. The theoretical part of the thesis deals with Alzheimer's disease together with nursing care, health care system in the Czech Republic and possibility to use services of day care and week care centres. In the empirical part of the thesis the method of qualitative research was used. A non standardized interview was applied as a method of questioning. The results of the qualitative research clearly show that the care for clients with Alzheimer's dementia represents a major burden for family members who care for the ill and in connection with the care provided they have to tackle following problems. They have to cope with the gradual deterioration of memory of the ill, which is associated with occasional forgetfulness, disorientation, wandering around. Another problem is to handle in an acceptable way the change of behaviour of their loved ones who often attack them both verbally and physically. Family members help patients with feeding, emptying, hygiene and grooming. They must solve the difficulties with activation of patients including memory exercises, they watch whether the patients swallow the medication. The conclusions of the thesis show that family members have to deal with many above mentioned problems when providing care for their loved ones. They themselves are tired and exhausted due to the care they provide, which is related to the incidents of their own health problems. They neglect themselves and their families, it is difficult for them to coordinate the care with their job and often come to work sleepy. For these reasons they would like to use services of day care and week care centres. It eases them of the burden of care, which they see as a benefit. The research revealed the expected services of the day care centre including expected nursing care. The research results were presented to the management of the Aftercare Hospital in Humpolec as it had planned to open a day care centre for patients with Alzheimer's dementia. Furthermore, the results served as a basis for the seminar for potential applicants, who would like to work in the centre. Based on information obtained in the course of writing of the thesis, a draft of the brochure was created which would serve as information material for family members of clients with Alzheimer's including the patients themselves.