Researching care home admissions after hospitalisation – my PhD story
Dr Jenni Burton, July 2018
Being admitted to a care home is an important and life-changing decision for any individual and their family. However, it can be an important and necessary way to provide care and support when a person’s needs cannot be met in their own home, particularly for some adults living with dementia. Every year, there are around 13,000 admissions to over 1,200 Scottish care homes. UK health policy documents argue that we should avoid care home admission from the acute hospital. Despite this, little research has been done to guide practitioners, individuals and their families in this area. My interest stems from my experiences in clinical practice as a junior doctor in Geriatric Medicine where this is not an infrequent scenario for our patients and their families. This is often much a more complex situation when the individual at the heart of the decision has a diagnosis of dementia.
In response, my PhD has taken a range of approaches to explore this topic including: reviewing published research; surveying practitioners; studying individuals using their hospital case notes; interviewing patients, families and staff and; using data collected routinely by the NHS and care homes.
Reviewing published research found 53 studies in 16 countries which considered predictors of care home admission from hospital. The main factors linked to this were increasing age, being female, having dementia and being limited in daily activities. Other factors, which may be important to older people and their families, were not considered. Care-home services are organised differently across the world and most studies did not describe the care provided. The survey found that many different terms are used to describe care homes, making it difficult for researchers to find relevant studies.
The clinical case-note review found differences among the in-hospital experiences and assessments of those discharged to a care home from hospital. The vast majority had some cognitive impairment during their stay, be that an acute episode of delirium or a known diagnosis of dementia. The patient’s own views were seldom recorded in their hospital notes. In the interviews, however, the opinions of the patients, their families and the staff caring for them were heard, offering insights into how the decisions are made and how best to support those involved.
Identifying who lives in a care home using data is challenging. Comparing different methods, including postcode matching and hospital coding, found these do not always agree. It is important that researchers and those using data to compare hospitals, are aware of the limitations of each method. The Scottish Care Home Census (2013-2016) includes >21,000 admissions to care homes: more than half of them from hospital. These data showed variations in the care needs, funding patterns and the number and proportion of individuals moving from there hospital.
The work done as part of my PhD has provided the first description and quantification of the challenges of identifying care home residents using routinely-collected health & social care data in Scotland. It has also allowed the first national description of those admitted to care homes in Scotland – from hospital and from home. It has enabled the views of patients, their families and those involved in their hospital care to be expressed and will help to inform guidance to support practice.
I am very grateful to Alzheimer Scotland and the Centre for Cognitive Ageing and Cognitive Epidemiology for the funding to allow me to undertake this body of work. If you want to find out more about specific projects or read any of the papers which have been published, please visit www.h2chresearch.org.uk
Attending and presenting at the 10th International Conference of Frontotemporal Dementias
Dr Ratko Radakovic
At the end of August 2016, I had the pleasure to attend the bi-yearly prominent conference relating to Frontotemporal Dementia (FTD), this year held in Munich, Germany. It is an opportunity for both junior and senior researchers, as well as practitioners, to meet and exchange findings in this area to foster important advancements in the field that may help people and families living with FTD.
FTD is a form of dementia that is commonly characterised by change is behaviour, language and planning or organising. This conference gave a great overview of the complexity of type this dementia and particularly focused on the burden for both the people living with the disease and their families. The topics ranged from social cognition (the knowledge of social rules, production of adequate social behaviour, perception of emotions or thoughts) to the neuroanatomy, spread and tremendous economic burden of the disease, giving the conference quite a wide and engaging scope. The poster session was particularly enthralling for myself as a researcher, as I was able to interact with others, learn about FTD (and other dementias) from different perspectives, which added considerably to my own knowledge. Furthermore, I was also able to present our own research entitled ‘Multidimensional apathy and Insight in Frontotemporal Lobar Degeneration and Alzheimer’s disease’, which showed that there were differences in the types of demotivation/apathy within dementia subtypes (i.e. FTD and Alzheimer’s disease), using a measurement method of our own design, called the Dimensional Apathy Scale. The poster was well received, attracting respectable attention with a result of some excellent questions and discussion topics with regards to behaviour in dementia.
Overall, this was a rewarding conference which truly encouraged unity and collaborative efforts amongst researchers as to further understanding this and other dementias.