Neuropsychiatric disorders in neurodegenerative disease kindred's
Research type
Research Study
Full title
Patterns of behaviour and personality in people with neurodegenerative diseases and their family members
IRAS ID
192845
Contact name
Caroline McHutchison
Contact email
Sponsor organisation
University of Edinburgh
Clinicaltrials.gov Identifier
PhD Subgrant of MRC funder's reference number, R43054
Duration of Study in the UK
2 years, 6 months, 28 days
Research summary
Summary of Research
Motor neurone disease (MND) is a neurodegenerative disease associated with muscle wasting and weakness. This is due to degeneration of areas in the brain that are responsible for movement. Changes in behaviour are common in MND. These include increased apathy, disinhibition, loss of sympathy/empathy and changes in the processing and storage of information about other people and social interactions (social cognition). These changes are similar to those seen in other psychiatric disorders including psychosis, anxiety and autism. Recent research has shown that relatives of MND patients have a higher rate of psychosis and suicide. This may indicate that certain families are more vulnerable to both psychiatric and neurodegenerative diseases.
This study aims to:
- Investigate whether there are higher frequencies of neuropsychiatric disorders in people living with MND and their family compared to the general population.
- If so, do the patterns of neuropsychiatric disorders relate to particular patterns of behavioural and personality change or clinical characteristics associated with MND.This is a collaborative study between Edinburgh, Scotland and Dublin, Ireland. In the UK, 60 people living with MND and 60 healthy controls will be recruited along with as many of their first and second degree relatives as possible. A detailed family history of diseases will be collected followed by a series of questionnaires measuring symptoms of neuropsychiatric disorders. This will be completed in person, via mail out or online. Where possible, cognitive data will also be collected and a spouse/partner/close friend will be invited to provide information on the participant's behaviour in a semi-structured interview.
Summary of Results
: We would like to thank all participants and their family members who took part in this study.Study Title: Patterns of behaviour and personality in people with neurodegenerative diseases and their family members.
Background:
Motor neurone disease (MND) is a progressive neurodegenerative condition that affects the motor nerves in the brain and spinal cord, leading to increasing weakness and loss of movement. In addition to physical symptoms, some people living with MND (plwMND) also experience changes in their thinking, referred to as cognition, and behaviour. Approximately 35% of plwMND experience mild cognitive and behavioural symptoms, while around 10-15% experience more severe symptoms and meet the diagnostic criteria for frontotemporal dementia (FTD), most often the behavioural-variant subtype.Common cognitive changes in MND include difficulties with attention, language, memory, and executive functioning, which refers to skills such as planning, organising, problem-solving, and controlling impulses. Behavioural changes may include reduced motivation or apathy, changes in personality, impulsivity, reduced awareness of others’ feelings, and alterations in eating habits or social behaviour. These changes can affect everyday functioning and relationships, even when physical symptoms are mild.
Research has also suggested that plwMND, and their family members experience higher rates of psychological and psychiatric disorders compared to the general population. However, much of the existing research has focused on formally diagnosed psychiatric conditions. It is increasingly recognised that some individuals may experience milder psychiatric symptoms, that do not meet diagnostic thresholds, often referred to as subclinical psychiatric symptoms.
The relationship between personal or familial psychiatric symptoms (both clinical and subclinical) and cognition and behaviour in plwMND remains poorly understand. Understanding these relationships may help to identify those at increased risk of specific cognitive and behavioural symptoms, and improve clinical assessment, support, and care for plwMND and their families.
The main aims of this study were to:
1. Determine whether there are higher rates of subclinical symptoms of psychiatric disorders in people living with MND and their family members compared to the general population.
2. Examine whether symptoms of psychiatric disorders in people living with MND and their family members is associated with changes in cognition and behaviour in the relative with MND.Methodology:
This study was carried out by researchers at the University of Edinburgh and was funded by the University of Edinburgh Centre of Cognitive Aging and Cognitive Epidemiology PhD Scholarship Program. The University of Edinburgh sponsored the study.PlwMND from across Scotland were invited to take part through the University of Edinburgh’s Clinical Audit Research Evaluation (CARE-MND) platform. Those who agreed to participate were then asked to invite first- and second-degree members of their family (e.g., parents, siblings, children, aunts) to take about psychiatric symptoms. These questionnaires asked about symptoms related to a range of psychiatric disorders and included symptoms people were experiencing at the time of the study as well as symptoms they may have experienced at any point earlier in their lives. PlwMND also completed a brief cognitive assessment, the Edinburgh Cognitive and Behavioural ALS Screen (ECAS), which is designed specifically for plwMND. In addition, someone who knew the person with MND well (study partner) was asked to take part in an interview to provide information about any changes in behaviour they may have noticed.
People without MND or a family history of MND (control participants) were recruited locally. They completed the same series of questionnaires and the ECAS. Additional data was collected separately by researchers from Trinity College, Dublin, who collaborated on the project. PlwMND and their family members were recruited through the Irish ALS Register and completed the same study procedures.
Results:
Overall, 128 plwMND and 98 of their family members participated in this study in Scotland and Ireland. An additional 72 family members from 10 families, whose MND relative was deceased at the time of the study, were also recruited from the Irish ALS/MND register. This resulted in psychiatric data for a total of 170 MND family members. Data were also collected from 130 locally recruited controls who did not have MND or a family history of MND.Frequency of psychiatric symptoms and disorders At the time of assessment, plwMND were more likely than control participants to report symptoms of depression and higher levels of anxiety. In contrast, they reported fewer symptoms associated with obsessive compulsive disorder (OCD) and attention-deficit-hyperactivity disorder (ADHD). Across the lifetime, plwMND generally reported fewer symptoms of several psychiatric conditions including depression, anxiety, manic episodes, and lower rates of autism, compared to control participants.
Family members of plwMND reported more symptoms of current depression and anxiety, and a higher frequency of OCD. Across the lifetime, family members were also more likely to report experiences of anxiety, a manic episode, or self-harming behaviour.
Relationship between psychiatric symptoms and cognition and behaviour Of the 128 plwMND who provided personal or familial psychiatric data, 125 (98%) also had cognitive and/or behavioural data.
We found some associations between plwMND’s experience of psychiatric symptoms and their cognition and behaviour. Difficulties with language were linked to current depression and anxiety, as well as higher levels of anxiety and attention-related symptoms. Poorer memory was linked to greater difficulties with motivation and getting started on tasks, as well as higher levels of impulsive behaviour. Certain behavioural changes in plwMND were also linked to psychiatric symptoms. For example, changes related to eating behaviours were associated with past experiences of mania or psychosis, as well as higher levels of alcohol use. Reduced motivation (apathy) was linked to a past episode of anxiety, and people with both MND and cognitive or behavioural impairment were more likely to have a history of anxiety than those without such impairment.
We also found several links between cognition and behaviour in plwMND and psychiatric symptoms in their family members. For example, for cognition, better executive functioning and language abilities in plwMND were linked to higher levels of anxiety, psychosis-like experiences, or difficulties with motivation in their family members. We also found that certain changes in behaviour in plwMND were associated with psychiatric symptoms in their family members. When plwMND had apathy, their family members reported higher levels of anxiety. Changes related to eating and impulse control in people with MND were linked to more attention and hyperactivity symptoms in family members (e.g., ADHD), while reduced impulse control was linked to more autistic-like traits. Overall, most of the links we found showed that greater behavioural changes in people with MND were associated with more mental health symptoms in their relatives.
Discussion:
This study found that plwMND reported higher levels of current depression and anxiety compared with control participants, alongside increased symptoms related to OCD and ADHD. Psychiatric symptoms were also common among family members of plwMND, including current depression, anxiety, and difficulties with motivation, as well as lifetime experiences of symptoms of psychosis. Together, these findings support growing evidence that subclinical psychiatric symptoms are an important feature of MND and may also extend to affected families.We also found that specific psychiatric symptoms and disorders were associated with cognitive and behavioural changes in MND. Current symptoms of depression, anxiety, attention-related difficulties, and reduced motivation were linked to poorer cognitive performance, while a lifetime history of psychiatric conditions—including depression, anxiety, autism, mania, and psychosis—was associated with behavioural changes. These findings suggest that both current and past psychiatric symptoms may be relevant markers of cognitive and behavioural involvement in MND.
Importantly, our results highlight the value of assessing subclinical psychiatric symptoms, in addition to formally diagnosed psychiatric disorders. Even mild psychiatric symptoms were associated with cognitive and behavioural changes, suggesting that comprehensive psychiatric assessment may help identify people with MND who are at increased risk of cognitive and behavioural impairment and who may require additional monitoring or support.
Overall, these findings provide further evidence of an overlap, or shared vulnerability, between MND, FTD, and psychiatric disorders. Studying these patterns more closely could help identify which plwMND are most at risk of developing thinking, behaviour, or psychiatric disorders, and improve our understanding of why these symptoms occur.
REC name
West of Scotland REC 4
REC reference
16/WS/0058
Date of REC Opinion
30 Mar 2016
REC opinion
Further Information Favourable Opinion