Do determinants of burden and emotional distress in dementia caregivers change over time?^†

^†Jacqueline van der Lee designed the study, was responsible for the statistical design of the study, carried out the research, supervized the data collection, collected and analysed the data and wrote the article.

Abstract

Objectives: Caring for a patient with dementia is a real challenge and can have considerable psychological consequences in the long run. Many caregivers, mostly relatives, feel highly burdened. To develop effective caregiver support to prevent caregivers from getting overburdened, insight is needed into the determinants of burden. The objective of this study is to explore which patient and caregiver characteristics determine the different kinds of caregiver burden over time, both in the short and in the long run.

Method: The study was longitudinal. Data on patients and caregivers, general burden and emotional distress were collected at three times: at baseline, at the end of treatment and at nine months. The study was conducted in a psychiatric skilled nursing home with a unit for integrative reactivation and rehabilitation (IRR) and at different sites of home-/day care, assisted living arrangements and nursing home wards (usual care).

Results: General burden is shown to be determined by severity of patient's neuropsychiatric symptoms, caregiver's sense of competence, health-related quality of life. Emotional distress is determined by severity of patient's neuropsychiatric symptoms, caregiver's sense of competence, high affiliation and patient gender.

Conclusion: In preventing or treating caregiver burden, professional interventions need to aim specifically at diminishing the neuropsychiatric symptoms in dementia patients and improving the sense of competence in caregivers.

Keywords:

• dementia and cognitive disorders
• caregiving
• stress/burden
• coping
• psychological and behavioural symptoms

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

For this study a grant has been received from the Netherlands Organisation for Health Research and Development (www.zonmw.nl), which is a national organisation that promotes quality and innovation in the field of health research and health care, initiating and fostering new developments. The majority of ZonMw's commissions come from the Ministry of Health, Welfare and Sport (VWS). An additional grant has been received from the Foundation for Promotion of Scientific Research into Nursing Home Care (Stichting Wetenschaps Bevordering Verpleeghuiszorg), the Netherlands.