StiV-H - Stability of Home-Based Care Arrangements for People with Dementia

Duration: 2014 - 2017
Funding: DZNE Witten

Principal investigatorDr. Bernhard Holle
Project coordination: Milena von Kutzleben, PhD, MScPH
Scientific staff: Kerstin Köhler, Jan Dreyer, Dr. Iris Hochgraeber

Background

The majority of people with dementia live in private households and are cared for by family members and significant others, such as friends, neigbours etc..

Most people with dementia and their informal carers prefer to maintain care at home for as long as possible. This is in line with the German social policy pursuing the principle ‘Aging in Place’. Many families affected by dementia use various types of professional or semi-professional support services; however, informal carers are the key care providers and coordinators in most home-based care arrangements. This informal care potential is the backbone of community-based dementia care and without these carers most people with dementia would not be able to remain at home.

The study STiV-H (Stability of home-based care arrangements for people with dementia) is a follow-up study to the DZNE study VerAH-Dem and continues to assess the phenomenon of the stability of home-based care arrangements for people with dementia over the course of time. The focus of both studies is set on the informal caring trajectories. A central result of the VerAH-Dem study is a phase model illustrating the informal caring trajectories of people caring for a community-dwelling person with dementia:


Creating and maintaining stability appeared to be a central aim in all phases of the informal caring trajectory. The follow-up study StiV-H takes up this result. The purpose of the project is first to approach the term ‘stability’ on a definitional basis and then to develop a research program to assess the ‘stability phenomenon’ in more depth.

Aims and research interest

The study StiV-H aims at illuminating what constitutes the stability of home-based care arrangements, and at identifying the relevant influencing factors on stability as well as methods and measures for assessing these influencing factors. Furthermore, the phase model of informal caring trajectories developed in the pre-study VerAH-Dem shall be empirically validated and further developed if necessary.

The results of the STiV-H study are expected to contribute to designing supportive interventions for people dealing with dementia in private households in order to promote and maintain the stability of home-based care arrangements and to enable families and individuals affected by dementia to create a satisfying (care) situation.

Methods

First of all, it will be necessary to define dimensions which are of relevance with regard to the stability of home-based care arrangements in the context of dementia, thus providing a theoretical basis for the StiV-H study. Based on this definition we will then be able to operationalize these dimensions with reference to relevant research questions and in terms of the collection and development of methods and measures for assessing these dimensions. At the same time, we can identify and assess the factors influencing stability in this context.

Steps planned:

  • Development of a definition of the stability of home-based care arrangements for people with dementia means.
  • A systematic review about trajectories of care arrangements for people with dementia with a focus on stability and its influencing factors.
  • Empirical validation of the phase model illustrating informal caring trajectories, using focus groups with informal carers who are responsible for a community-dwelling person with dementia.
  • Development and compilation of an assessment for the stability of home-based care arrangements for people with dementia.