Monthly Archives: September 2017

Prof Tom Dening: Dementia research – it’s not all drug trials

wam logo final blogWhen people consider dementia research, they often think of trials of drugs to treat or slow the disease. However, understanding and combating the many and varied negative effects of dementia requires more than just drug trials. In my research at the Centre for Dementia at the University of Nottingham’s Institute of Mental Health, we’re looking at an important topic within dementia care where no drug is likely to be available: hearing loss in care home residents.

Dementia is common: there are about three-quarters of a million people with dementia in the UK. Hearing loss is common too: almost half of people in their 70s have some degree of hearing loss, and this rises to 80% in people aged over 80. The two conditions often occur together, especially among residents of care homes, where around 75% of residents have dementia and at least that proportion have hearing loss. Probably about 300,000 care home residents have both.

This convergence of dementia and hearing loss in care home residents matters for several reasons:

  • care homes are noisy environments
  • care staff may lack knowledge and skills to support hearing aids and to communicate effectively
  • the presence of other conditions, such as dementia, can affect staff attitudes and approach to hearing loss
  • care staff may not have English as their first language
  • hearing aids may be supplied but are often not used, get mislaid or broken, or batteries go flat
  • losing expensive hearing aids can upset families and residents
  • the resident may not be able to use or may not tolerate hearing aids, or even understand their purpose.

Clearly, dementia and hearing loss are big problems among residents in care homes. Indeed, if you mention ‘hearing aids’ and ‘care homes’ in the same sentence, most people just shake their heads or grin wryly, because this is recognised as a difficult area of care home work.

At the moment, there is no obvious intervention to use in a clinical trial in this area. It is not just a matter of giving everyone a hearing aid, because there is no good evidence that this improves outcomes for residents with dementia. Also, because there are very few, if any controlled trials of any intervention to improve hearing or communication in care homes, there is little point in attempting a conventional systematic review.

I had been interested in this clinical area for many years, having visited hundreds of people with dementia in care homes and finding that so many of them had hearing loss. When I came across realist methodology, I thought that this looked like a promising approach. Realist synthesis (or in this case, realist review) is a method that uses multiple sources of data to examine questions of what works for whom, when, and under what circumstances. Data can be obtained from the published literature, including the so-called grey literature as well as journal publications, but also from people who are expert in the area either from personal or professional experience (context experts).

Our team has received a funding award from the NIHR Research for Patient Benefit programme to run a realist evaluation called ORCHARD: Optimising hearing-Related Communication in care Home Residents with Dementia. We have been gratified that everybody whose help we have sought has been enthusiastic and interested to know what we will find out. However, of all the things that make this a strong proposal, I think the most important is that the research has arisen from everyday clinical practice.

Professor Tom Dening (third right) and the ORCHARD team

Our approach is very different to a drug trial for dementia – there will be no drugs, but instead we’ll look at what approaches, aids and adaptations work best for people in care homes with dementia and hearing loss. We won’t be generating data by testing a drug or intervention on participants either, but rather synthesising and evaluating existing data from many sources.

Our evaluation will identify best practice and research priorities, including which interventions to use and how to measure them. In this way, we hope our research will have as big an impact for people with dementia as any drug trial.

Note: This content was first published here on the National Institute for Health Research (NIHR) blog and has been redistributed with permission.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Professor Tom Dening is Professor of Dementia Research and head of the Centre for Dementia in the Institute of Mental Health at the University of Nottingham School of Medicine. He is LCRN dementia speciality lead for East Midlands.

NIHR is running a campaign to mark World Alzheimer’s Month. Find out more on the NIHR website.

 

 

Advertisements

Leave a comment

Filed under Uncategorized

Book review by Eugene Egan: Narratives of recovery from mental illness, the role of peer support

 

418p2QzlUgL._SX331_BO1,204,203,200_

Narratives of recovery from mental illness: The role of peer support
Mike Watts and Agnes Higgins
Routledge (2017)
ISBN: 978-1-13-884799-6
158 pages

It’s not often that I come across a book that has resonated with me on such a profound scale but this is one of them. Narratives of recovery from mental illness: The role of peer support is part of a growing body of evidence-based research that is challenging the prevailing bio-medical approach that currently dominates the mental health system especially within the field of psychiatry. Using a narrative based approach the authors, Mike Watts and Agnes Higgins, interviewed 26 people with lived experience of mental distress about their recovery journey to illustrate the transformative power of peer support. Those interviewed were all members of GROW, a mutual support group, that advocates the importance of social interaction that encourages people to become active agents in taking back control of their lives, through peer support, rather than just leaving it to health care professionals with their reliance on medication.   Those interviewed included people with a wide-range of diagnosis, including schizophrenia, bi-polar disorder and depression.

Mike Watts, Research Fellow at Trinity College Dublin, and Agnes Higgins, Professor in Mental Health at the School of Nursing and Midwifery at Trinity College Dublin, facilitated the research by giving those interviewed the opportunity to tell their stories from a personal perspective demonstrating the power of co-production thus reflecting the growing call for a more person-centred social approach to recovery. Their findings suggest there’s too much emphasis on the clinical approach to recovery and not enough focus on personal recovery and the importance of social inclusion. Adding that social factors are too important to be over-looked and ignored.

Relying solely on the medical model in the mental health system ignores the many social factors and adverse life experiences, such as bullying, sexual and physical abuse, divorce and bereavement, that can have a negative impact on people’s mental health but with social intervention through peer support and mutual empowerment the authors were able to demonstrate that people who had experienced mental distress were able to recover and build the emotional resilience needed to cope with adversity and other challenges that life throws at us.

While the researchers suggest that the traditional approach through the use of medication may be necessary in the early stages of some people’s recovery their finding illustrated that recovery can also be resolved through every day social interactions primarily through the use of peer support and social inclusion and with much better results.  The authors have provided us with an alternative way of looking at the prevailing medical framework of mental health therefore demonstrating the need to consider other avenues and pathways towards recovery and wellbeing.

Many of those interviewed in the study explained how they found their experiences with the medical profession a very debilitating and disempowering experience. For example ‘Tom’ described an encounter with his doctor when he was nineteen and had just questioned why the medication had failed to alleviate his symptoms when the doctor looked at him very gloomily and said:  Well you’ll be on medication for life. I don’t think you’ll ever hold down full time work. Friendships will be difficult but you’ll make friendships within the hospital’. Adding he’d never drive or have a girlfriend (p65).  It was only when ‘Tom’ came across GROW with its emphasis on mutual support and social interaction did ‘Tom’ become empowered to take control and take that path towards recovery and wellbeing thus proving his doctor wrong.

The emerging recovery story is taking hold across the western world and it is one that is ‘illuminating some of the limitations of the prevailing medical story and one which commentators such as UK clinical psychologist Mike Slade et al. (2012) believe has “come of age”, (p18).

In a chapter entitled: Recovery through mutual help, the authors discuss the eight processes identified in the study which testified to the value of peer support for those recovering from mental illness. These included an empathetic and compassionate social network, becoming hopeful, reconnecting with the self and others, positive risk-taking, and a re-authoring of a more positive identity which eventually led to a re-enchantment with life.

As someone who is undergoing the recovery process with many years lived experience of mental distress I have no doubt that this book demonstrates a profound and deep understanding of the person-centred recovery process and will in my opinion become a seminal read that puts forth evidenced-based research about the transformative power of peer support that challenges the medical model. The authors, Agnes Higgins and Mike Watts, along with the 26 co-authors, have produced a piece of work that will be a source of hope and inspiration for people with lived experience of mental illness and emotional distress, as it was for me.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Eugene Egan (eganwriter@live.co.uk) is a peer worker and recovery college facilitator for Birmingham and Solihull Mental Health Foundation Trust.

Leave a comment

Filed under Uncategorized