Development of a needs-oriented working aid for the end-of-life care of people with severe dementia
Project leader: Dr. Klaus Maria Perrar
Contact: Yvonne Eisenmann, Holger Schmidt
Duration: 08/2011 - 05/2015
Funding institution: Federal Ministry of Family Affairs, Senior Citizens, Women and Youth (BMFSFJ)
The loss of speech as a common symptom in severe dementia is a challenging issue for providing optimal end-of-life care because people affected are often unable to communicate their needs and wishes verbally (WHO, 2012). Although many significant issues related to the disease have been identified, empirical data indicates that care for people with end-stage dementia is often inadequate (Hendriks et al., 2014).
Our study aimed to develop a guidance tool for residential care by analysing the needs of people with severe dementia at the end-of-life. This tool should help care teams to improve recognition of needs and to implement a need-oriented dementia care.
In order to develop the guidance tool we performed:
- A systematic review analysing the current status of research concerning this topic.
- A qualitative analysis using the grounded theory approach. Data were collected via participant observation of residents with severe dementia and group discussions with carers and family members.
- National and international symposia with experts from different fields of dementia care to discuss the results.