What it’s like to live without a sense of smell?

Summary: Olfactory disturbances have wide-ranging implications for both the mental health and emotional well being of sufferers.

Source: University of East Anglia

The smell of cut grass, freshly baked bread, childhood memories, lost loved ones, Christmas. What happens when it’s all gone?

A new study from the University of East Anglia reveals the huge range of emotional and practical impacts caused by a loss of smell.

It finds that almost every aspect of life is disrupted – from everyday concerns about personal hygiene to a loss of sexual intimacy and the break-down of personal relationships.

The researchers hope that their findings will help motivate clinicians to take smell problems more seriously, with better help and support offered to patients.

Prof Carl Philpott, from UEA’s Norwich Medical School, said: “Smell disorders affect around five per cent of the population and cause people to lose their sense of smell, or change the way they perceive odours. Some people perceive smells that aren’t there at all.

“There are many causes – from infections and injury to neurological diseases such as Alzheimer’s and as a side effect of some medications.

“Most patients suffer a loss of flavour perception which can affect appetite and can be made even worse if distortions in their sense of smell also co-exist.

“Previous research has shown that people who have lost their sense of smell also report high rates of depression, anxiety, isolation and relationship difficulties.

“We wanted to find out more about how a loss of smell affects people.”

The researchers worked with the Smell and Taste clinic at the James Paget University Hospital, Gorleston-On-Sea. The clinic opened in 2010 and was the UK’s first clinic dedicated to taste and smell.

The study involved 71 participants aged between 31-80 who had written to the clinic about their experiences. It was carried out in collaboration with Fifth Sense, the charity for people affected by smell and taste disorders.

The research shows that sufferers experience wide-ranging impairments to their quality of life. These included a negative emotional impact, feelings of isolation, impaired relationships and daily functioning, impacts on physical health and the difficulty and financial burden of seeking help.

Prof Philpot said: “One really big problem was around hazard perception – not being able to smell food that had gone off, or not being able to smell gas or smoke. This had resulted in serious near misses for some.

“But smell is not just a life-saving sense – it is also life-enhancing.

“A large number of the participants no longer enjoyed eating, and some had lost appetite and weight. Others were eating more food with low nutritional value that was high in fat, salt and sugar – and had consequently gained weight.

“Participants had lost interest in preparing food and some said they were too embarrassed to serve dishes to family and friends which had an impact on their social lives.

“The inability to link smells to happy memories was also a problem. Bonfire night, Christmas smells, perfumes and people – all gone. Smells link us to people, places and emotional experiences. And people who have lost their sense of smell miss out on all those memories that smell can evoke.

“We found that personal hygiene was a big cause for anxiety and embarrassment because the participants couldn’t smell themselves.”

“Parents of young children couldn’t tell when their nappies needed changing, and this led to feelings of failure. One mother found it difficult bonding with her new baby because she couldn’t smell him.”

“Many participants described a negative impact on relationships – ranging from not enjoying eating together to an impact on sexual relationships,” he added.

This shows one of the study participants

A new study from the University of East Anglia reveals the huge range of emotional and practical impacts caused by a loss of smell. Image is credited to University of East Anglia.

All of these problems led to diverse range of negative emotions including anger, anxiety, frustration, depression, isolation, loss of confidence, regret and sadness. And the problems were compounded by a lack of understanding about the disorder among clinicians.

Prof Philpott said: “The participants described a lot of negative and unhelpful interactions with healthcare professionals before coming to the James Paget Smell and Taste clinic. Those that did manage to get help and support were very pleased – even if nothing could be done about their condition, they were very grateful for advice and understanding.”

Duncan Boak, Founder and Chair of Fifth Sense, said: “Anosmia can have a huge impact on people’s quality of life in many ways, as this research demonstrates. An important part of Fifth Sense’s work is giving our beneficiaries a voice and the opportunity to change the way society understands smell and taste disorders, whether through volunteering or participating in research studies like this one. The results of this study will be a big help in our ongoing work to improve the lives of those affected by anosmia.”

The study was undertaken at The Smell & Taste Clinic, ENT Department, James Paget University Hospital NHS Foundation Trust. No funding was required.

About this neuroscience research article

Source:
University of East Anglia
Media Contacts:
Lisa Horton – University of East Anglia
Image Source:
The image is credited to University of East Anglia.

Original Research: Closed access
“An unmet need: Patients with smell and taste disorders”. Sally E. Erskine, Carl M. Philpott.
Clinical Otolaryngology doi:10.1111/coa.13484.

Abstract

An unmet need: Patients with smell and taste disorders

Objectives
There are large numbers of patients with olfactory disturbance in the UK and shortfalls in assessment and support amongst mainstream practice in both primary and secondary care leading to significant quality‐of‐life impairment and potential missed diagnoses. The aim of this study was to determine the key themes which can be identified from the accounts of anosmia sufferers and to identify important areas to target for future research or service development.

Design
Qualitative analysis of written patient accounts from patients corresponding with a tertiary smell and taste clinic in the UK. This qualitative study utilised unstructured written patient accounts from consenting patients experiencing olfactory disturbances received by the smell and taste clinic. Framework analysis was performed using Nvivo 10 software.

Setting
Tertiary smell and taste clinic.

Participants
Consenting patients who contacted the smell and taste clinic with accounts of their experiences.

Main outcome measures
Themes generated by qualitative analysis with Nvivo software.

Results
Accounts submitted by 71 participants were included in the analysis; age range 31‐80 years, 45 females, 26 males. Themes identified include negative emotional impact, feelings of isolation, impaired relationships and daily functioning, impact on physical health and the difficulty and financial burden of seeking help.

Conclusions
Olfactory disturbances have a wide‐ranging impact on the lives of sufferers, compounded by a lack of knowledge of the disorder amongst clinicians. There is a role for further support and education both for sufferers and for clinicians, as well as a need to improve our understanding of olfactory disturbance.

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