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Introduction Receiving a diagnosis of young onset dementia is particularly distressing; the person under 65 years is often in employment, with financial commitments, young children, and an active social life. Some of the stress experienced by younger people experiencing cognitive changes can be reduced by an early and accurate diagnosis, but this is contingent on the timing of disclosure and a process which is sensitive and appropriate to the person. The study aim was to explore experiences of giving and receiving a diagnosis of young onset dementia, by triangulating the perspectives of the key parties involved. Methods A qualitative design was employed, using semi-structured interviews. Participants (N = 47) included people with young onset dementia (n = 10), family members (n = 12), and health and social care professionals (n = 25). Thematic analysis and triangulation enabled identification of overall themes across different participant groups. Results All participant groups agreed on key aspects of good disclosure practice, with two overarching themes: The optimal conditions for disclosure, and how best to disclose a diagnosis. Positive experiences of disclosure were prefaced on having the appropriate space and time; having a support person present; clearly labelling the diagnosis; providing appropriate information at the right pace. Other findings include recommendations for longer appointment times, offering additional support for young families, and for carers of people with atypical presentations (e.g. frontotemporal dementia). Conclusion Many people with young onset dementia had unsatisfactory disclosure experiences. Health and social care professionals should provide a 'pre-disclosure' appointment, elicit the amount of information the person may want at the point of disclosure of the diagnosis, balance truth and hope, provide contact details for follow-up, and overall be mindful of the individual in front of them. While young onset dementia may be a life-al

Background: People with young onset dementia face unique challenges. Notably, at time of symptom presentation, many people affected by young onset dementia are still employed with significant financial obligations. The aim of this study was to explore the specific impact that young onset dementia has on continued employment and finances and to identify ways to optimise post-diagnostic approaches in this regard. Methods: Purposive sampling, with a maximum variation technique, was used to recruit a small but diverse range of people with young onset dementia in Ireland. In-depth semi-structured interviews were conducted, and data were analysed using Reflexive Thematic Analysis. In total, 22 interviews were conducted with 10 people with young onset dementia and 12 spouses and children. Two themes were constructed: impact of young onset dementia on (I) employment and (II) finances. Findings: Participants' lived accounts showed the devastating effect of a diagnosis of young onset dementia on working life, and the resultant financial, social, and psychological consequences. Participants reported having to leave paid employment early, reported losing contracts and retiring on medical grounds. There were financial implications caused by loss of income, and many additional expenses owing to dementia were incurred. In some families, spouses had to take up employment at the same time as a caring role to mitigate the loss of income, and young children were anxious at the resultant occupational and financial tensions. Conclusion: People diagnosed with young onset dementia encounter significant challenges associated with employment, and individual and family finances. There is a need for more specific information and guidance from healthcare professionals around employment rights, income support and welfare benefits and the pension status for this group of people. Additionally, healthcare professionals should be cognisant of the additional financial burden people face in young ons

Policies and services to support informal caregivers vary considerably across countries. This paper examines the role of caregivers and how perspectives on that role may influence the availability of benefits and services in three countries that differ considerably in their care systems - Sweden, Ireland and the United States. We developed a nine-dimensional framework for examining differences, including policies and how the role of caregiver is conceptualized. We found differences in the three countries in how services are organized, which reflected assumptions about the caregiver role. There were also similarities in the three countries. Caregivers held an ambiguous position within each social system and there was little concern for equity in the delivery of support services. Increased clarity about the role of caregivers may facilitate development of policies that more effectively meet their varied needs.

The biomedical model has traditionally informed the dominant discourse on dementia and has significantly shaped practitioners', policy makers' and researchers' responses. This model contextualises dementia as a progressive neuro-degenerative cognitive disorder and focuses on deficits and underlying pathology, often overlooking the fact that the person can and should be an active partner in the treatment process. Beginning in the late 1990s, the exclusive reliance on the bio-medical model has come under increasing scrutiny with a growing awareness that by recasting dementia in broader social and more humanitarian terms, much can be done to promote the individual's quality of life. Different frameworks and analytical tools have been forwarded to help us better understand dementia. These include personhood, citizenship, public health, disability and human rights. This review examines the merits of framing dementia as a disability, a citizenship concern and a human rights issue. It highlights some of the potential gains that can arise for the individual in using a human rights model to enhance practice, inform policy and create a more balanced research agenda. The article concludes by arguing that the complexities and magnitude of dementia are such that it requires multiple responses and a broad range of interpretative frameworks.

Document type: Commentary/Note.

Review of: Arlene Astell, Sarah Kate Smith and Phil Joddrell, Using technology in dementia care, Jessica Kingsley: London and Philadelphia, 2019; 230 pp. ISBN: 978-1-78592-417-0 (pbk).

This book is all about dementia in Ireland and what has and has not been happening in a country where dementia has been a taboo topic for so long. In particular it examines the dementia landscape since late 2014, following the launch of Ireland's first National Dementia Strategy. A lot has happened in Ireland since that time but a lot more needs to happen for people to live well with dementia and have their human rights upheld. There are an estimated 55,000 Irish people living with dementia and these figures are set to triple by 2050. Although topics explored in the book,such as obtaining a diagnosis, accessing home care services and moving from home into a nursing home relate to Ireland, they are discussed against the backdrop of policy, practice and research developments in dementia in other parts of the world. In this way the book provides the reader with a wealth of information including research evidence, best practice guidelines and international expertise. The book has been dedicated to Mnánah 'éireann, in recognition of the hard physical and emotional work, caregivers,mostly women do behind closed doors. Throughout the book, an appeal is made for more state support to be given to these formal and informal caregivers.