The British Psychological Society has released evidence-based recommendations for health professionals managing the psychological health of people with Huntington’s disease and other neurodegenerative disorders.
Its document noted the lack of research on psychological interventions and the poor access to specialized mental health services for these patient groups, highlighting an urgent need for better care.
“Living with the physical challenges of these conditions is undoubtedly difficult but we also need to make sure we are looking to support the mental health and well-being of the hundreds of thousands of individuals in the UK affected by these conditions,” Jane Simpson, PhD, a co-author of the guidelines and a professor at Lancaster University, said in a press release.
“We hope that our guidelines will add to the voices of patients and supporting associations for more funded research and more support for these essential psychological services,” Simpson added.
Neurodegenerative diseases such as Huntington’s, Parkinson’s, amyotrophic lateral sclerosis (also known as motor neurone disease), and multiple sclerosis are marked by both motor and non-motor symptoms, and considerably affect patients’ well-being.
It is therefore essential to identify the best approaches to managing the psychological difficulties these patient groups experience to improve their mental health and overall quality of life.
The newly published recommendations, based on a literature review, are meant to help guide psychologists and other healthcare providers caring for people with these four neurodegenerative diseases, which “share similarities in terms of psychological difficulties,” the researchers wrote.
The guidelines specifically focus on psychological interventions for better mental health, regardless of whether difficulties here are a by-product of other symptoms or the result of disease-associated chemical changes in the brain.
Its authors acknowledged that many psychological difficulties may need to be addressed by multi-disciplinary teams, and that improving patients’ physical function can raise their psychological well-being.
They also highlighted “the harmful psychological effects of living in a culture which views disability as an individual construct rather than as a result of an ill-equipped society which is sometimes poorly motivated to accommodate fully all those with physical impairments.”
Regarding Huntington’s disease specifically, the guidelines note that depression and cognitive impairment have been reported to have a more significant impact on patients’ quality of life than motor symptoms or pain.
In agreement, a previous U.K. survey found that access to expert care for the mental health aspects of Huntington’s was the top priority among patients and their families.
The most common psychological difficulties experienced by Huntington’s patients include depression, mood extremes, ‘irritability’ and aggressiveness, anxiety, agitation, compulsions, and apathy (general indifference to surrounding events).
The guidelines also emphasize the disease-associated mental burden of testing positive for Huntington’s but not yet having symptoms.
“Given the widespread and multiple difficulties the disease causes, further exacerbated by the familial nature of HD [Huntington’s disease], this condition can have a devastating effect across the lifespan of [patients] and family networks,” the researchers wrote.
Despite the limited data on the effectiveness of psychological interventions in these patients, the authors provided a list of potentially beneficial approaches, including patient education programs, cognitive behavioral therapy, acceptance and commitment therapy, and mindfulness- and resilience-based interventions.
Cognitive behavioral therapy is a talking therapy that focuses on teaching people how to identify and change negative patterns of thought. Mindfulness encourages people to focus on the thoughts and feelings they are experiencing in a given moment, without judging them and worrying about the future or brooding on the past.
In addition, the guidelines note that current access to psychological services for Huntington’s patients across the U.K. “is patchy and unequal, with few psychologists with specific expertise in HD,” and that these patients are more likely to be given medication for these difficulties than to undergo psychological approaches.
“While we are able to make some useful recommendations regarding what therapies can be effective for different psychological difficulties, we have also been struck by both the lack of research, especially for people with motor neurone disease and Huntington’s disease, and the lack of accessible psychological services for many in the UK,” Simpson said.
However, “the provision of psychological support can clearly not be delayed until more evidence is published,” the researchers wrote. Rather, “professionals must work with the limited evidence and the more generic guidance currently available.”
Georgina Carr, chief executive of the Neurological Alliance, said that “not only does this set of recommendations provide invaluable guidance for psychologists and allied professions on how best to work with people with the named conditions, but it also shines a light on the need for further research in this area.”
The Neurological Alliance is a coalition of organizations working to improve care for people with neurological disorders in England.
“We therefore hope that this guidance will both encourage the provision of high-quality evidence and support the development of effective, timely, and accessible psychological support for all people with Huntington’s disease, Parkinson’s, motor neurone disease, and multiple sclerosis,” the researchers wrote.
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