Young‐onset dementia in memory clinics in the Netherlands: PRECODE‐GP

Background: Although driving by persons with dementia is an important public health concern, little is known about driving cessation in younger people with dementia. We aimed to determine the prevalence and factors affecting driving cessation in individuals with and without dementia aged under 65 years attending a memory clinic in a European setting. Methods: Subjects were consecutive patients assessed at a specialist memory service at a university teaching hospital between 2000 and 2010. The data collected included demographic, clinical, standardized cognitive assessments as well as information on driving. Dementia diagnosis was made using ICD-10 criteria. Results: Of the 225 people who were or had been drivers, 32/79 (41%) with young-onset dementia (YOD) stopped driving compared to 25/146 (17%) patients who had cognitive impairment due to other causes. Women were more likely to cease driving and voluntarily than men (p < 0.001). Diagnosis of YOD was associated with driving cessation (1.193, 95% CI 0.570–1.815, p ≤ 0.001), and was mediated by impairment in praxis with the highest indirect mediation effect (0.754, 95% CI 0.183–1.401, p = 0.009). Conclusions: YOD diagnosis, female gender, and impairment in praxis have a higher probability for driving cessation in those under 65 years of age with cognitive impairment.

Download Full-text

‘This is Killing me Inside’: The Impact of Having a Parent with Young-Onset Dementia

Dementia ◽

10.1177/1471301217702977 ◽

2017 ◽

Vol 18 (3) ◽

pp. 1089-1107 ◽

Cited By ~ 3

Author(s):

Helen J Aslett ◽

Jaci C Huws ◽

Robert T Woods ◽

Joanne Kelly-Rhind

Keyword(s):

Interpretative Phenomenological Analysis ◽

Service Providers ◽

Phenomenological Analysis ◽

Parent Support ◽

Young Onset ◽

Roles And Responsibilities ◽

Affected Parent ◽

Young Onset Dementia ◽

The Impact ◽

Depth Interviews

This study explored the experience of young adults having a parent with young-onset dementia. In-depth interviews were undertaken with five participants aged between 23 and 36 years of age and these were analysed using interpretative phenomenological analysis. Participants were found to experience a number of stresses in relation to their parent’s illness, many of which were linked to loss and guilt. Five main themes were identified related to relationship changes, shifts in roles and responsibilities, support for the non-affected parent, support for self and the impact of living with their own potential risk of dementia. These findings are discussed in relation to the existing literature and suggest that individuals with a parent with young-onset dementia have needs which service providers should consider in the wider context of young-onset dementia care.

Download Full-text

P2-207: Prevalence of Family History of Dementia in a Specialist Young-Onset Dementia Clinic Cohort

Alzheimer s & Dementia ◽

10.1016/j.jalz.2016.06.1375 ◽

2016 ◽

Vol 12 ◽

pp. P700-P700

Author(s):

Yang-Lin Ting ◽

Levinia Lim ◽

Nagaendran Kandiah ◽

Adeline Su Lyn Ng

Keyword(s):

Family History ◽

Young Onset ◽

History Of ◽

Young Onset Dementia

Download Full-text

The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study

International Psychogeriatrics ◽

10.1017/s1041610213001890 ◽

2013 ◽

Vol 26 (12) ◽

pp. 2001-2010 ◽

Cited By ~ 32

Author(s):

Joany K. Millenaar ◽

Deliane van Vliet ◽

Christian Bakker ◽

Myrra J. F. J. Vernooij-Dassen ◽

Raymond T. C. M. Koopmans ◽

...

Keyword(s):

Coping Styles ◽

Specific Information ◽

Structured Interviews ◽

Specific Knowledge ◽

Young Onset ◽

Care And Support ◽

Young Parent ◽

Young Onset Dementia ◽

The Impact ◽

Family Centered

ABSTRACTBackground:Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs.Methods:Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes.Results:The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services.Conclusion:In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

Download Full-text

Family carers’ narratives of the financial consequences of young onset dementia

Dementia ◽

10.1177/14713012211009341 ◽

2021 ◽

pp. 147130122110093

Author(s):

Melanie Bayly ◽

Megan E. O’Connell ◽

August Kortzman ◽

Shelley Peacock ◽

Debra G. Morgan ◽

...

Keyword(s):

Life Cycle ◽

Family Member ◽

Early Retirement ◽

Narrative Approach ◽

Family Carers ◽

Young Onset ◽

Costs Of Care ◽

Financial Consequences ◽

Young Onset Dementia ◽

Provision Of Care

Individuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. The purpose of this research was to qualitatively explore carers’ experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed. Eight carers (7 women and 1 man) provided a written online narrative about their journey with young onset dementia and any financial consequences experienced, with open-ended prompts to elicit details not yet shared. Narratives were inductively coded and analyzed using a thematic narrative approach. Carers described a voluntary or involuntary end to employment for the person with young onset dementia around the time of diagnosis. This engendered ongoing and anticipated financial consequences, combined with the need for carers to balance employment with the provision of care (which often meant early retirement for spousal carers). Common themes were tension between the needs to provide care and earn income, altered financial prospects, costs of care, and lack of available and accessible supports to ameliorate financial consequences. Findings illustrate the reality of financial consequences across the trajectory of young onset dementia. These consequences may manifest differently for spousal and child carers and are not being adequately addressed by existing supports.

Download Full-text

A qualitative investigation into family carers’ experiences of living with/caring for a person with young-onset dementia

International Journal of Care and Caring ◽

10.1332/239788221x16166022097035 ◽

2021 ◽

Author(s):

Cathal Blake ◽

Louise Hopper

Keyword(s):

Thematic Analysis ◽

Significant Risk ◽

Significant Risk Factor ◽

Complex Nature ◽

Prevalence Rates ◽

Qualitative Investigation ◽

Family Carers ◽

Young Onset ◽

Young Onset Dementia ◽

Inductive Thematic Analysis

Ageing is a significant risk factor for developing dementia; however, some people develop symptoms before the age of 65. Although less common, it is referred to as young-onset dementia. Estimating prevalence rates in Ireland is difficult, as there has been little study around what it is like to live with/care for this cohort; consequently, it is poorly understood. Nine primary carers were interviewed using semi-structured one-to-one interviews. Interview data were analysed with inductive thematic analysis. Themes included sense of loss, diagnostic issues, appropriateness of services, stigma and carer strain, illustrating the complex nature of caring for someone with young-onset dementia.

Download Full-text