Joany Millenaar

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

BACKGROUND 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 childrens 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 childrens 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.

The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review.

In this review, the care needs and experiences with the use of available services of individuals with young‐onset dementia (YOD) and their caregivers were investigated. This knowledge is an important prerequisite for the development of appropriate interventions and personalized care to address their specific needs and problems.

The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study.

OBJECTIVES The impact of the dementia might be more severe for caregivers of people with young onset dementia (YOD) compared with those who care for someone with late onset dementia (LOD), as a young age among caregivers has been identified as a predictor of increased burden. The present study compares well-being between LOD and YOD caregivers longitudinally because this knowledge is essential in order to develop adequate support programs. DESIGN, SETTING, AND PARTICIPANTS 220 YOD and 108 LOD patient-caregiver dyads were included from two prospective cohorts with a 2-year follow up. To assess well-being we used the Short Sense of Competence Questionnaire, the RAND-36, the Symptom Checklist 90, and the Montgomery Asberg Depression Rating Scale. The severity and the course of the different measures used to describe caregiver burden were analyzed with linear mixed models. RESULTS Caregivers in both groups experienced high levels of physical and psychological complaints, mild depressive symptoms, lower health-related quality of life (HRQoL), and decreased feelings of competence. The severity and the course of most measures were similar in both groups, although HRQoL on both the physical and the mental domain was lower for the YOD caregivers. CONCLUSIONS The number of actual psychological and physical complaints does not differ between YOD and LOD caregivers. YOD caregivers have greater perceived difficulties in daily life because of these complaints, however.

Availability of information on young onset dementia for patients and carers in six European countries

OBJECTIVES To identify information available in six European countries (England, France, Germany, Netherlands, Portugal, Sweden) that addresses the specific needs of people with young onset dementia (YOD) and their carers, and identify gaps. METHODS Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis. RESULTS 21 sources of information were identified (Netherlands 6, England 6, France 3, Germany 2, Portugal 2, Sweden 2); 11 were from voluntary sector organisations. Sources dedicated to YOD were limited (4 websites, 4 books); all other YOD information was sub-entries in generic dementia sources, difficult to locate and with limited coverage of relevant topics. Gaps related to implications of living with YOD in Germany, Portugal and Sweden. CONCLUSION Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD. PRACTICAL IMPLICATIONS Information is an important means of supporting carers; their needs change as the condition progresses. A comprehensive resource collating key information is needed so that the issues that differentiate the specific needs of people living with YOD from those of people with dementia in older age are available and easily located.

Exploring perspectives of young onset dementia caregivers with high versus low unmet needs

This study is part of the Research to Assess Policies and Strategies for Dementia in the Young project. Information about specific needs in young onset dementia (YOD) will provide the basis for the development of an e‐health intervention to assist caregivers in coping with YOD in several European countries.

Ineens ben je mantelzorger: De gevolgen van dementie op jonge leeftijd voor het gezin

SamenvattingDementie kun je ook op jonge leeftijd krijgen. Op je vijftigste en zelfs nog aanzienlijk eerder. We spreken van dementie op jonge leeftijd wanneer de eerste verschijnselen van dementie voor het 65ste levensjaar optreden. Wanneer dementie zich al zo vroeg voordoet, kan dit ingrijpende gevolgen hebben voor het hele gezin.

Vormen van dementie IV

SamenvattingDe afgelopen decennia zijn ‘dementie’ en ‘Alzheimer’ in de publieke opinie min of meer synoniem geworden, constateerde Frans Gilson vorig jaar in een bijdrage aan Denkbeeld. En ook in het onderzoek naar oorzaken en behandelmogelijkheden trekt de ziekte van Alzheimer het leeuwendeel van geld en menskracht naar zich toe. Maar de ‘dementiefamilie’ is groter en diverser dan de ziekte van Alzheimer. In dit nummer aandacht voor frontotemporale dementie (FTD), na Alzheimer de meest voorkomende vorm van dementie bij mensen jonger dan 65 jaar.

Zorgbehoeften bij dementie op jonge leeftijd

SamenvattingBakker C, Millenaar JK, het NeedYD-projectteam. Zorgbehoeften bij dementie op jonge leeftijd. Huisarts Wet 2014;57(12):633-5. De meeste mensen brengen dementie vooral met ouderdom in verband, maar in 6 tot 9% van de gevallen begint de dementie voor het 65ste levensjaar. In het kader van het Needs in Young-onset Dementia (NeedYD)-onderzoek hebben we onder meer zorgbehoeften van jonge mensen met dementie en hun gezinsleden, en hun ervaringen met zorg in kaart gebracht. Hiertoe hebben we gedurende twee jaar 215 jonge mensen met dementie en hun gezinsleden gevolgd. Zorgbehoeften en ervaringen met de zorg hebben we onderzocht aan de hand van de Camberwell Assessment of Needs for the Elderly (CANE) en kwalitatieve interviews. De resultaten laten hoge percentages onvervulde zorgbehoeften zien bij de persoon met dementie. Ook vonden we belangrijke verschillen tussen mensen met dementie zelf en hun mantelzorgers in wat zij als onvervulde zorgbehoeften aangaven. Jonge mantelzorgers worden dubbel belast doordat zij de zorg voor hun naaste moeten combineren met allerlei andere taken en verantwoordelijkheden. Ook bleek dat kinderen zich belast voelen door de zorgsituatie, waarbij zij zich zorgen maken om beide ouders en terughoudend zijn in het zoeken naar hulp voor zichzelf. De resultaten van dit onderzoek laten zien dat dementie op jongere leeftijd specifieke consequenties heeft, die belangrijke implicaties hebben voor het ontwikkelen van passende voorzieningen voor deze jonge gezinnen.AbstractBakker C, Millenaar JK. Care needs and experiences of relatively young people (< 65 years) with dementia and their relatives. Huisarts Wet 2014;57(12):633-5. Most people associate dementia with old age, yet in 6-9% of cases dementia starts before 65 years. The Needs in Young-onset Dementia (NeedYD) study attempted to assess the care needs of relatively young people with dementia and their relatives and their experiences with the care provided. To this end, 215 people with dementia and their families were followed up for 2 years. Care needs and experiences were assessed with the Camberwell Assessment of Needs for the Elderly (CANE) and qualitative interviews. Results revealed a large burden of unmet care needs in the individuals with dementia. There were also substantial differences in what the individuals with dementia and their relatives reported as unmet care needs. Young carers experience a double burden of caring for their relative and taking on extra tasks and responsibilities. The children of affected individuals also experience the situation as demanding, being anxious about both parents and reluctant to seek care or assistance for themselves. The results of this study show that dementia in relatively young individuals has specific consequences that have implications for the development of appropriate facilities for these ‘young’ families.