Abstract

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.

Highlights

  • The Netherlands has the highest long-term care expenditures compared to all other member countries of the Organization for Economic Co-operation and Development.[1,2]

  • Including persons with dementia and informal caregivers in research and the development of care packages is an important component of patient-centred care and will help patient empowerment

  • This study shows that Dutch persons with dementia as well as their informal caregivers are generally pleased with the formal and informal care that they received

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Summary

| INTRODUCTION

The Netherlands has the highest long-term care expenditures compared to all other member countries of the Organization for Economic Co-operation and Development.[1,2]. Dementia is known as the one of the leading causes of death in older adults and the most costly disease[6] in the Netherlands, costing 6.6 billion euros in 2015, corresponding to 7.7% of the total Dutch health-care expenditures.[7,8] Franke et al[7] found that since the reforms, the number of crisis situations (unplanned hospitalizations and nursing homes admissions) and the burden on informal caregivers increased. These developments imply an increased need to understand how to prevent crisis situations for persons with dementia and their informal caregivers living at home. Including persons with dementia and informal caregivers in research and the development of care packages is an important component of patient-centred care and will help patient empowerment

| Study design
| Study participants
| Key findings
Findings
| Strengths and limitations
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