Symptom Assessment and Management in people with Dementia at the end of life (SYMPA-DEM)

Introduction

More people are living to (very) old age, and because dementia is strongly related to ageing, we also see a large increase in the number of people who die from or with dementia. Generally, people prefer to die at home, and in a way that they can feel good physically, psychologically, socially and spiritually. This is a challenge with dementia, in which verbal communication of symptoms becomes increasingly difficult with advancing disease. This makes it particularly difficult to assess when this well-being is threatened, and management of symptoms or other palliative care needs should be installed. Recognizing and dealing with bothersome symptoms in people with dementia is therefore an important challenge for the coming decades. Earlier research (thesis Klpawijk) showed that there is a need for novel strategies to improve assessment and management of these symptoms, such as specially for dementia developed observational assessment instruments. Recently such a new international observational assessment instrument has been developed for this group of patients, the Integrated Palliative Outcome Scale for People with dementia (IPOS-Dem). The use of technological sensing of distress signals may also lead to an improved assessment, however there are questions regarding the acceptability (patients, family care givers, professionals) to this kind of technology at the end of life in dementia. In this study, we want to improve end of life care for people with dementia, male and female alike, of any cultural background.

Aim of the project

The aim of this project is to study the symptom burden and recognition and assessment of these symptoms in people with dementia. This information will help us develop new strategies to recognize and assess symptoms earlier and treat them better in the future. This project has the following research questions:

1. Research Questions Research Question 1A & Research Question 1B
   What are the symptoms that people with dementia have at the end of their life? We will perform a systematic literature review [RQ1A] and make use of an existing database (NAMASTE-study) in which symptoms of 70 people dying with dementia have been collected [RQ1B].
2. Research Question 2A & Research Question 2B
   Does the use of an instrument, the IPOS-Dem, contribute to better recognition and insight into this symptom burden? RQ2A: data collection in 50 patients with the IPOS-Dem symptom assessment instrument, RQ2B: observations of multidisciplinary team meetings after use of IPOS-DEM symptom assessment instrument, interviews and focus groups with nursing staff/physicians).
3. Research Question 3
   Do people with dementia and their family caregivers consider the use of monitoring technology acceptable in the end of life with dementia (to gain a better recognition of the symptom burden)?

Expected end product

The end product will be a ‘How to evaluate and manage symptoms at the end of life Tool’ which we will disseminate for educational and implementation purposes.

Collaboration

The total study is part of the special combination trajectory PhD training program (aioto) performed by an elderly care physician in training. Cooperation between patient partners (Ouderenberaad Zuid-Holland Noord), educational partners (training programs Elderly Care Physicians and training programs General Practioners) are in place. This study is in cooperation with the Academic Nursing Home Research Network of the region, UNC-ZH, in which 12 large care organizations (more than 50 nursing homes) work together with LUMC to stimulate research in long term care situations. Data collection will take place within this network.