Young-onset dementia and the need for specialist care

Objectives: Receiving a timely and accurate diagnosis and gaining access to age-appropriate support for younger people living with dementia (YPD) remains a challenge both in the UK and internationally because the focus of most dementia services is primarily upon the needs of older people.

The political case to improve services for YPD depends upon the establishment of an understanding of the clinical symptoms, an unequivocal evidence base about need and an accurate evaluation of the size of the population affected. This short report assesses the evidence base from international studies regarding service design and delivery. The goal is to raise awareness, advance best practice and galvanise the international community to address the serious underfunding and underprovision of care for this marginalised group.

Conclusion: The current evidence suggests that there are universal problems, regardless of continent, with delays to diagnosis and poor understanding of optimum models for service provision and long-term care.

Full reference: J.E. Carter, J.R. Oyebode & R.T.C.M. Koopmans : Young-onset dementia and the need for specialist care: a national and international perspective. Aging & Mental Health. Published online March 14th 2017.

Measuring younger onset dementia:the ‘lived experience’ for patients and caregivers

Spreadbury, J H & Kipps, C. Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers.  | Dementia. | Published online: January 23, 2017


The qualitative research on young onset dementia is providing insights about the ‘lived experience’ of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers.


The search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles.


In the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may be a demanding process and the possibility of dementia may not be anticipated. In the post-diagnostic period, patients and caregivers use several strategies to cope and adjust. Patients can withdraw from established responsibilities while caregivers assume compensatory roles/duties. Patients perceive changes in their identity while caregivers perceive changes in the caregiver–patient relationship. Both can experience grief, isolation, and stigma.


The diagnosis of dementia elicits significant changes in thinking, emotion, and lifestyle that patients and caregivers are unlikely to be ready for. Both receive insufficient support or guidance in particular of a psychological nature on how to cope and adjust.

Care-planning intervention for people living with early-stage dementia

Orsulic-Jeras, S.  et al. The SHARE program for dementia: Implementation of an early-stage dyadic care-planning intervention. Dementia. Published online before print October 13, 2016.



This article describes the implementation of SHARE (Support, Health, Activities, Resources, and Education), a counseling-based care-planning intervention for persons living with early-stage dementia and their family caregivers (CGs).

The foundation of SHARE is built upon assessing and documenting the person living with dementia’s care values and preferences for future care. Using the SHARE approach, CGs are given an opportunity to achieve an understanding of their loved one’s desires before the onset of disease progression when the demand for making care decisions is high.

Through working together with a SHARE Counselor, the care dyad begins to identify other sources of support, such as family and friends and service providers, in order to build a more balanced and realistic plan of care for the future.

Data were collected from 40 early-stage dementia care dyads to determine the acceptability of having structured discussions about future care in the early stages of dementia.

Findings from this study demonstrate the importance of planning in the early stages when persons with dementia can voice their care values and preferences for future care. Finally, this paper illustrates the use of supportive strategies such as rapport building, establishing buy-in, and communication to initiate care-related discussions with care dyads in the early stages that will help lead to more effective decision making in the future.

Young onset dementia: Negotiating future workplace roles and identities

Roach, P. Young onset dementia: Negotiating future workplace roles and identities
Dementia 1471301216674420, first published  October 9 2016


In this Dementia editorial, Pamela Roach writes of the need to educate employers in ways of working with younger people with dementia, of supporting such individuals to maintain the person in employment such as by modifying activities and negotiating new horizons of work productivity. Through such education, understanding and consideration of mutual goals and needs – the needs of an employer being balanced with the needs of a person with dementia – it is also possible to maintain purposeful activity for younger people with dementia.

Read the full editorial here

Determinants of quality of life in young onset dementia

Millenaar, J. et al. Aging & Mental Health. Published online: 27 September 2016


Background: Promoting adaptation, improving well-being and maintaining an optimal quality of life (QOL) is an important aspect in dementia care. The purpose of this study was to identify determinants of QOL in young onset dementia, and to assess differences in QoL domains between people with Alzheimer’s disease (AD) and frontotemporal dementia (FTD).

Methods: In total 135 persons with AD and 58 persons with FTD were included from two prospective cohort studies. QOL was assessed with the proxy reported quality of life in Alzheimer’s disease questionnaire (QoL-AD). Possible determinants were explored using multiple linear regression and included sociodemographic variables, diagnosis, dementia severity, disease awareness, neuropsychiatric symptoms, met and unmet needs and hours of personal and instrumental care. Differences between QOL domains in people with AD and FTD were calculated using Mann-Whitney U tests.

Results: Lower QOL was associated with more depressive symptoms, lower disease awareness, and a higher amount of needs, both met and unmet. People with AD scored lower on the memory and higher on the friends’ subscale. No differences were found for the other items.

Conclusion: This study demonstrates a unique set of determinants of QOL in AD and FTD. Interventions directed towards these specific factors may improve QOL.

Read the abstract here

Couples’ experiences with early-onset dementia: An interpretative phenomenological analysis of dyadic dynamics

Wawrziczny, E. et al. (2016) Dementia. 15 (5). pp. 1082-1099

pair-378562_960_720Objective: The growing interest in early-onset dementia has attracted attention to the situation and experiences of the caregiver, most often the spouse. Several qualitative studies on caregiving spouses have underlined the importance of the feeling of loss, the change of role reported by the caregiving spouses, and the strategies used to protect the person with dementia, all of which raise the question of the relational dynamics at play in these dyads. The present study on 16 couples examines the experiences of each partner, as well as the kinds of interactions taking place within the dyad and how they have evolved since the disease began.

Design: An interpretative phenomenological analysis was conducted on dyadic semi-structured interviews.

Results: Seven axes emerged from the analyses, showing that control over symptoms gradually leads to deterioration of marital interactions and to the components of marital dissolution.

Read the abstract here


Impact of young onset dementia on informal caregivers compared with late onset dementia

By Jo Moriaty for the Social Care Elf Blog. Published: 3rd March 2016

We know a lot about the long term consequences for family carers of supporting someone with dementia.  Much of this research is cross-sectional, meaning that we only have a snapshot of how carers are managing.  However, results from studies in which participants have been followed up over time (for example, Mahoney et al., 2005, Schulz et al., 2010) indicate that there is a ‘wear and tear’ effect whereby carers experience greater stress as time goes on and as the person for whom they care needs more support.  This can lead to them finding it more difficult to cope with some aspects of caring than they did previously.

For pragmatic and methodological reasons, most published research has concentrated on carers looking after someone whose dementia has developed after the age of 65.  We know much less about the challenges faced by those supporting a person whose dementia developed under the age of 65 (young onset dementia).  Research such as this, which has both a longitudinal design and includes carers of people with dementia of all ages is long overdue.

Original research article:

Millenaar, J. K., de Vugt, M. E., Bakker, C., van Vliet, D., Pijnenburg, Y. A. L., Koopmans, R. T. C. M. & Verhey, F. R. J. (2015) The impact of young onset dementia on informal caregivers compared with late onset dementia: results from the NeedYD Study. American Journal of Geriatric Psychiatry.

Living with younger onset dementia by BMJ talk medicine | Free Listening on SoundCloud

BMJ talk medicine

EBN associate editor Gary Mitchell caught up with Kate Swaffer in London earlier this month to discuss her upcoming book, what it is like to live with dementia, and the current areas for development within healthcare systems and society.

Kate’s book, “what the hell happened to my brain?” is to be released later this year with Jessica Kingsley Publishers. If you are interested in finding out more about Kate’s work check out her webpage and regular blog series here:

via Living with younger onset dementia by BMJ talk medicine | Free Listening on SoundCloud.