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

Millenaar, Joany; Bakker, Christian; Vliet, Deliane van; Koopmans, Raymond T.C.M.; Kurz, Alexander; Verhey, Frans R.J.; Vugt, Marjolein E. de

doi:10.1002/gps.4749

Cited by 24 publications

(39 citation statements)

References 19 publications

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“…Next, a diagnosis of FTD and a lower level of deficit awareness by the person with YOD were also associated to a lower quality of the relationship perceived by the spouse. This confirms earlier findings that a lack of disease awareness in the person with YOD is linked to a lower quality of life in caregivers (Baptista et al, 2016) and more unmet needs and difficulties to arrange care and support by caregivers (Millenaar et al, 2017). A lower quality of the relationship was also associated to lower levels of initiative toward daily living activities in the person with YOD.…”

Section: Discussionsupporting

confidence: 89%

“…For example, neuropsychiatric symptoms such as apathy and hyperactivity can be difficult to understand for spouses (Ducharme et al, 2013;Massimo et al, 2013;Paton et al, 2004). In previous qualitative research, caregivers acknowledged to miss their comrade due to apathy and experienced a decline in reciprocity in the person with YOD (de Vugt et al, 2003;Millenaar et al, 2017). Hyperactivity is characterized by agitation, euphoria, disinhibition, irritability, and aberrant motor behavior.…”

Section: Discussionmentioning

confidence: 99%

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The quality of the relationship perceived by spouses of people with young-onset dementia

Bruinsma

Peetoom

Millenaar

et al. 2020

Int. Psychogeriatr.

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Background: Young-onset dementia (YOD) has a profound impact on spouses. However, little is known on how the quality of the relationship changes over time in YOD. This study aims to determine how the quality of the relationship changes over time and identify predictors of this change. Methods: This study used data from the NEEDs in Young onset Dementia (NeedYD) study. The primary outcome measure was the quality of the relationship perceived by spouses measured throughout 24 months. Baseline characteristics of persons with YOD and spouses were also measured to assess their predictive value. Results: Totally, 178 dyads were included. The perceived quality of the relationship deteriorated over time. A longer symptom duration, a diagnosis of frontotemporal dementia, lower levels of awareness of deficits, lower levels of initiative toward daily living activities, and higher levels of apathy, hyperactivity, depression, and anxiety in the person with YOD were associated with a lower perceived quality of the relationship by spouses. A coping style characterized by palliative and passive reacting patterns and higher levels of neuroticism in spouses was also associated with a lower quality of the relationship. Conclusion: The quality of the relationship as perceived by spouses deteriorated over time and was influenced by characteristics of the person with YOD as well as their spouse. Helping spouses to come to terms with factors that threaten their sense of couplehood might help them to develop a more positive attitude toward their spousal relationship and improve the quality of the relationship and care.

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Section: Discussionsupporting

confidence: 89%

Section: Discussionmentioning

confidence: 99%

The quality of the relationship perceived by spouses of people with young-onset dementia

Bruinsma

Peetoom

Millenaar

et al. 2020

Int. Psychogeriatr.

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“…Study sample sizes ranged from 9 (Jong and Boersma, 2009) to 1,494 (Zwaanswijk et al, 2013), with 42% of studies involving less than 100 participants and 19% of studies involving 20 participants or less. In all but one study (Millenaar et al, 2018), the proportion of female caregivers was higher than the proportion of male caregivers. Caregivers were most often the spouse/partner of the PWD, but in 26% of the studies, the largest caregiver group was adult children.…”

Section: Resultsmentioning

confidence: 78%

“…Studies concerning caregivers' needs appear to use "needs" as an umbrella term for programs, services, and information identified by caregivers (Griffiths and Bunrayong, 2016;Wawrznicsky et al, 2017). Often there is no clear distinction between needs that are met and needs that are unmet, although a handful of studies we reviewed do focus specifically on caregivers' unmet needs (Black et al, 2013;Hughes et al, 2014;Millenaar et al, 2018;Stirling et al, 2010;Vangainkar et al, 2013). Based on this narrow segment of the literature, it is possible that some needs are met less often than others, such as the need for referrals to appropriate community resources (Black et al, 2013) and obtaining adequate support for one's emotional health (Vaingankar et al, 2013).…”

Section: Suggested Solutions To Address Needsmentioning

confidence: 99%

Understanding the needs of caregivers of persons with dementia: a scoping review

Queluz

Kervin

Wozney

et al. 2019

Int. Psychogeriatr.

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Background:The number of people living with dementia (PWD) is increasing worldwide, corresponding with an increasing number of caregivers for PWD. This study aims to identify and describe the literature surrounding the needs of caregivers of PWD and the solutions identified to meet these needs.Method:A literature search was performed in: PsycInfo, Medline, CINAHL, SCIELO and LILACS, January 2007–January 2018. Two independent reviewers evaluated 1,661 abstracts, and full-text screening was subsequently performed for 55 articles. The scoping review consisted of 31 studies, which were evaluated according to sociodemographic characteristics, methodological approach, and caregiver’s experiences, realities, and needs. To help extract and organize reported caregiver needs, we used the C.A.R.E. Tool as a guiding framework.Results:Thirty-one studies were identified. The most common needs were related to personal health (58% emotional health; 32% physical health) and receiving help from others (55%). Solutions from the articles reviewed primarily concerned information gaps (55%) and the education/learning needs of caregivers (52%).Conclusion:This review identified the needs of caregivers of PWD. Caregivers’ personal health emerged as a key area of need, while provision of information was identified as a key area of support. Future studies should explore the changes that occur in needs over the caregiving trajectory and consider comparing caregivers’ needs across different countries.

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“…Several interesting observations emerge from an examination of these studies. First, the vast majority relied on qualitative methodologies (6)(7)(8)(9)(10). Second, several commonalities emerged regarding the objective and subjective difficulties that EOD family caregivers encounter, such as the process of obtaining an adequate diagnosis, the need to find appropriate services (10)(11)(12), managing financial changes (7,9,13), increased burden and strain (11,14,15) and poor quality of interpersonal relationships (9,14).…”

Section: Introductionmentioning

confidence: 99%

Family caregivers’ and professionals’ stigmatic experiences with persons with early‐onset dementia: a qualitative study

Werner

Shpigelman

Turgeman

2019

Scandinavian Caring Sciences

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Objectives Recently, research has focused on understanding the needs of persons with early‐onset dementia and their family caregivers who often experience stigmatic beliefs. However, to date, research has not provided a thorough and deep understanding of the stigma formation process and its implications for this population. Thus, the aim of the present study was to explore the stigma formation process as experienced by family members as informal caregivers of persons with early‐onset dementia, and professionals as formal caregivers who are involved in the development, management and provision of services. Method We conducted three focus groups with 16 participants, including spouses of a person with early‐onset dementia and professionals. The focus groups’ transcripts were analysed following a thematic analysis procedure. Results Results indicated that both family members and professionals encounter stigmatic experiences because of their association with younger persons with dementia. Lack of knowledge emerged as the main antecedent and emotional burden as the main consequence of stigma. Conclusion Stigmatic experiences emerged as a pervasive and complex phenomenon among formal and informal caregivers of persons with early‐onset dementia, suggesting the need to developing a comprehensive and integrated approach to reduce them at the individual, professional and societal levels.

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

Cited by 24 publications

References 19 publications

The quality of the relationship perceived by spouses of people with young-onset dementia

The quality of the relationship perceived by spouses of people with young-onset dementia

Understanding the needs of caregivers of persons with dementia: a scoping review

Family caregivers’ and professionals’ stigmatic experiences with persons with early‐onset dementia: a qualitative study

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