Original Study
Predictors of the Time to Institutionalization in Young- Versus Late-Onset Dementia: Results From the Needs in Young Onset Dementia (NeedYD) Study

https://doi.org/10.1016/j.jamda.2012.09.011Get rights and content

Abstract

Objective

To investigate the time from symptom onset to institutionalization in persons with young-onset dementia (YOD) and compare these findings with late-onset dementia (LOD), and to determine which factors predict institutionalization in persons with YOD compared with LOD.

Design/Setting

Longitudinal study of community-dwelling patients with YOD and LOD and their caregivers.

Participants

A total of 226 patients with YOD and 102 with LOD and their informal caregivers were recruited through memory clinics and health care facilities.

Measurements

Cox proportional hazard models were used to relate covariates with time to institutionalization. The main outcome was time from symptom onset to institutionalization. Key predictors were cohort (YOD or LOD), neuropsychiatric symptoms, caregiver distress caused by neuropsychiatric symptoms, and caregivers’ sense of competence (Short Sense of Competence Questionnaire total score).

Results

The time from symptom onset to institutionalization was nearly 9 years for patients with YOD compared with approximately 4 years for patients with LOD. In the YOD group, apathy significantly predicted time of institutionalization. Furthermore, the caregiver’s competence in caring for the person with dementia significantly predicted institutionalization in both groups.

Conclusions

Patients with YOD are cared for at home for a longer period than patients with LOD. The results of this study underline the importance of a timely diagnosis for these patients and their families to facilitate the initiation of appropriate care and support. Support programs aimed at enhancing the caregivers’ sense of competence and ability to deal with neuropsychiatric symptoms, especially apathy, may postpone the institutionalization of the patient.

Section snippets

Study Design and Selection of Participants

This study is part of the Needs in Young Onset Dementia (NeedYD) study. The design of this 2-year follow-up study has been described previously.14 Baseline data from 215 patient–caregiver dyads were used. Patients were consecutively referred from university medical centers (n = 56), regional hospitals (n = 10), or regional community mental health services (n = 20). In addition, dyads applied for participation (n = 14) or were recruited through YOD-specialized day care facilities (n = 115).

Patient and Caregiver Characteristics

From the original samples, 226 patient–caregiver dyads were included in the YOD group and 102 dyads were included in the LOD group. In the YOD group, 6 caregivers refused to participate because of high levels of subjective burden. The demographic characteristics of these caregivers did not differ from those of the included caregivers. Information about symptom onset was not available for 4 patients with YOD and two with LOD.

There were significant differences between the YOD and LOD groups on

Discussion

Contrary to our expectations, we found that the time from symptom onset to institutionalization was more than twice as long for YOD patients (9 years) compared with LOD patients (4 years). Our hypothesis that both neuropsychiatric symptoms and the related distress would predict institutionalization in YOD was not fully confirmed. Only apathy emerged as a significant predictor of the time from inclusion to institutionalization. Contrary to our expectations, the distress related to

Conclusion

The findings of this study have important implications for service provision given the prolonged period that patients with YOD are cared for at home. The results stress the importance of a timely diagnosis for these patients and their families to facilitate the initiation of appropriate care and support.32 Early introduction of, for example, case management within the context of a multidisciplinary YOD care program may ameliorate transitions in care and enhance the caregivers’ sense of

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    This research was funded by the Dutch Alzheimer Society and the Florence Care Group in the Netherlands.

    The authors have indicated that they have no conflicts of interest regarding the content of this article.

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