New guidelines published by The British Psychological Society highlight the lack of mental health research and services for people living with Parkinson’s disease and other neurodegenerative conditions, and offers evidence-based recommendations for health professionals to help better serve patients.
“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,” Jane Simpson, PhD, professor at Lancaster University and co-author of the guidelines, said in a press release.
Living with a neurodegenerative disease can take a psychological toll. Both motor and non-motor symptoms can impair quality of life and, in some cases, physical and chemical changes in the brain can have substantial repercussions on mental health.
The new guidelines are aimed at psychologists and other healthcare providers who are caring for people with Parkinson’s, as well as three other conditions — Huntington’s disease, motor neurone disease, and multiple sclerosis. The recommendations specifically focus on psychological interventions that can help to ease the mental health burdens associated with these diseases, regardless of whether these burdens result from underlying brain chemistry or as a by-product of other symptoms.
The guidelines also acknowledged “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.”
For Parkinson’s disease specifically, the guidelines note that, since the condition is primarily considered a motor disorder, psychological difficulties are often under-recognized by healthcare professionals. Nonetheless, psychological issues — including, but not limited to, anxiety, apathy, cognitive impairment, and impulse control problems — are common among people with Parkinson’s, and can substantially affect quality of life.
“Indeed, psychological difficulties in [Parkinson’s disease] are very common and can be as disabling as motor symptoms,” the guidelines state.
For Parkinson’s-associated psychological problems, strong evidence supports the use of cognitive behavioral therapy, a form of talk therapy that focuses on teaching individuals how to identify and change negative patterns of thought. This kind of therapy can be delivered one-on-one or in groups, in person, via phone, or online.
Mindfulness — where individuals are encouraged to focus on the thoughts and feelings they are experiencing in a given moment, without judging their own feelings and worrying about the future or brooding on the past — can be helpful for people with Parkinson’s.
Since physical symptoms are inextricably tied to mental health, the guidelines also stress the importance of adequate care to help manage these symptoms.
“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,” added Georgina Carr, chief executive of the Neurological Alliance, a coalition of organizations working to improve care for people with neurological conditions in England.
Recognizing that people with Parkinson’s are individuals is also important and, as such, healthcare providers need to treat patients based on their specific situation. For example, younger Parkinson’s patients often experience different psychological challenges than older individuals because of different societal pressures.
“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 … and the lack of accessible psychological services for many in the UK,” Simpson said.
“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,” she added.
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