Interview with Prof. Dr. François-Laurent De Winter, elderly and neuropsychiatrist, Campus Gasthuisberg, University Psychiatric Centre KU Leuven
Professor De Winter, first of all, thank you very much for speaking to us.
*** What can you say in general terms about the psychological impact associated with Parkinson’s disease?
Being diagnosed with Parkinson’s already has a major psychological impact on most people. Many have a vision of doom in their minds and wonder how things will progress. And then there is the realisation that the disease won’t go away. Currently, there is no cure. On top of that, the condition is not only chronic but it changes. In fact, it is a neurodegenerative disease, so it progresses. This means that throughout the disease process you have to keep adapting to new symptoms and limitations. Certain activities that could still be performed smoothly become no longer possible after a while. This demands a lot from the person with Parkinson’s. A condition in which both physical and mental ability to adapt are often restricted, requires flexibility. That certainly does not come naturally to everyone.
*** Where does this difficulty lead?
Parkinson’s does not always lead to mental difficulties or disorders, but it does make people more vulnerable to them. Anxiety and depressive symptoms are more common with Parkinson’s disease. It is estimated that up to about half of patients experience them. Psychological factors, such as having more difficulty adjusting to the new situation after diagnosis, increase the risk of this, but biological brain changes associated with the disease also make people more susceptible to numerous psychological symptoms.
*** Are there certain profiles that are more likely to suffer from depression?
Although the disease increases vulnerability to experiencing depression, certainly not everyone with Parkinson’s disease will become depressed. Factors such as personality style, social support and genetic predisposition are likely to play a role. People who tend to worry easily or tend to have a rather pessimistic view of the world as well as people who are socially unrestrained are at higher risk. People who have – perhaps long ago – been victims of psychological trauma are also more vulnerable.
*** Studies show that 1 in 5 patients have suicidal thoughts. Should patients and their loved ones panic?
This is no reason to panic, but it is a reason to discuss and ask about suicidal thoughts, especially if people are feeling gloomy or dejected. Usually, suicidal thoughts are a symptom of another problem, usually depression. It is especially important to treat that as well as possible.
It is also important to realise that the percentage of people with Parkinson’s who die as a result of suicide is significantly smaller than 1 in 5. Fortunately, having suicidal thoughts does not always lead to a suicide attempt or suicide.
*** What can patients do to lower the risk of depression and suicidal thoughts?
Depression and suicidal thoughts happen to people. You can’t always do much about it yourself. However, the better a person can adapt to the new reality after diagnosis, the greater the psychological resilience. If, for instance, you manage to adjust your goals, expectations or ambitions to more attainable or realistic objectives, you will be less likely to experience frustrations and have negative thoughts and feelings. Regular exercise is also likely to be preventative. Significant social contacts are also important, as loneliness increases the risk of depression.
*** So, should you stop setting ambitious goals?
It is good to keep setting goals, as long as they are realistic. The problem arises when you hold on to things that are no longer achievable. Letting go of what can no longer be achieved, and focusing on what is still possible, can make room for positive experiences. In fact, it is even recommended to – to the extent possible – stay engaged with what you yourself find valuable. Hold on to what is part of your identity and by no means let that identity coincide with the illness and its limitations.
*** Does it help to see positive examples of others with Parkinson’s?
For some it can be inspiring, but it is important not to compare yourself too much to others. Each person experiences the disease differently, and it is not always helpful to compare yourself with someone who may seem to be functioning better. On the other hand, someone with Parkinson’s who achieves something positive can be not only inspiring, but also a powerful signal socially. Just because you have the diagnosis does not mean you are suddenly capable of nothing.
*** When should you seek help for psychological issues?
If you are experiencing issues or are bothered by something, it is best to seek help. However, it is often those around you who will initially ask for help. If someone persistently expresses negative thoughts, withdraws, expresses a wish to die or has suicidal thoughts, it is all the more important to seek help. Similarly, if those around them notice that someone is behaving differently, it could be a signal of underlying mental health problems. Moreover, asking and talking about suicidal thoughts is an important part of suicide prevention, especially in cases of depression. It is also important to mention that mental health problems can often be well managed. Depression or anxiety disorders, for instance, can usually be treated. The road to recovery or a cure can take time, but doing nothing or waiting is not an option. Problems such as anxiety or depression are completely reversible. Someone in a depression can get out of it completely. When symptoms only diminish without going away completely, even that can make a substantial difference to people in terms of their quality of life.
*** Is apathy always a sign of mental health problems in Parkinson’s?
Apathy can occur without depression, although it can sometimes be a symptom of depression. In essence, apathy is a lack of motivation without necessarily being associated with suffering for the patient. It is often mainly the environment that perceives the lack of initiative as frustrating. In depression, in addition to disinterest and/or gloom, there is often guilt, self-blame thoughts, and sometimes thoughts about dying. To recognise this difference, it is important to understand the patient’s experience.
***Who is the best person to talk to about psychological symptoms?
Initially, you discuss them with loved ones such as your partner or family members. The GP is also a first point of contact. As a rule, these are all people who know you well and can therefore often assess whether something is ‘out of the ordinary’. The GP or neurologist treating you can often assess whether a referral to a psychologist or a psychiatrist is necessary. Early treatment can help prevent symptoms from worsening and leading, for example, to severe depressive episodes and possibly suicide.
*** Why is it difficult to talk about mental health symptoms?
Indeed, this is often the case. Sometimes people are unsure whether their symptoms are related to Parkinson’s or do not know that psychological symptoms can be part of the clinical picture. Sometimes they feel ashamed of their issues, both when it comes to depressive or suicidal thoughts, but also, for example, experiencing hallucinations. The threshold to seek help for psychological complaints is sometimes high. I sometimes notice when I ask about whether the person is experiencing certain issues during a consultation, people say ‘yes, yes, I’ve actually had that for a long time, but I never mentioned it’. The partner is then also sometimes surprised that that issue was there but not expressed. Once patients verbalise their concerns, they can be interpreted and treated in the best possible way.
*** How can psychologists and psychiatrists help with psychological complaints?
The nature and severity of the issues will mainly determine which approach is most appropriate. For issues mainly related to, for example, difficulty in coping with the condition and the limitations associated with it, psychological treatment in the form of talk therapy or psychotherapy may be useful. The psychiatrist will be the first point of contact in case of severe psychological issues or behavioural changes. As a doctor, the psychiatrist has a better understanding of the underlying biological mechanisms that, in combination with psychological and social factors, play a role in the development of psychological symptoms in Parkinson’s disease. By the way, Parkinson’s medication can also play a role in the development of psychological complaints. Motor and psychological issues are often linked and sometimes an adjustment of medication is recommended initially. Medication such as antidepressants are also often useful, whether or not in combination with psychotherapy, for anxiety or depressive disorders, for example. This is mainly the case if the symptoms are more severe. Several types of antidepressants can also be used safely in combination with medication for Parkinson’s disease. Neuromodulation techniques such as electroconvulsive therapy can also be used usefully in certain specific situations.
*** In your experience, how do informal carers perceive the care of Parkinson’s patients, especially if they experience psychological symptoms. What is your advice for them?
Informal carers are often heavily burdened, especially when the patient becomes less independent. This can be physically and emotionally demanding, especially if the patient also has psychological symptoms and even more so if the informal carer is already older. Sleep problems, which are common in Parkinson’s, can seriously disrupt the sleep of informal carers, sometimes making it even more difficult.
It is therefore important that informal carers can be relieved at times and take time for themselves and dare to ask for help. Self-care is essential to sustain care. Bringing in external help, such as home nursing, can prevent overburdening.
*** What message would you like to give to people who come into contact with Parkinson’s patients?
Patients sometimes have the impression that their symptoms are underestimated by those around them. For example, fatigue and concentration problems are not always visible but can be very stressful. In addition, patients sometimes feel that their environment expects too much of them, and this creates additional pressure. It is important that informal carers, family and friends of patients are aware of this. This can prevent unnecessary tensions.
*** Conclusion
In summary, Parkinson’s disease can be associated with not only physical but also profound psychological symptoms. Depression and anxiety are common problems patients face. On the one hand, this is related to the disease process, but psychological factors such as having to constantly adapt to an ever-changing situation also play a role. It is important for patients to talk about it with their neurologist or GP when they are having a hard time, and not to keep dealing with it themselves. If necessary, a referral can then follow.
In addition, the environment, including informal carers, plays a crucial role in supporting the patient. They know the patient best and will often be the first to detect changes in psychological functioning. At the same time, they should be aware of their own limits and take care of themselves as well.
By understanding and acknowledging the symptoms, tensions can be reduced and the quality of life for both the patient and the informal carer can be improved.
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If you have suicidal thoughts, please call 02 648 40 14 for 24/7, free, compassionate and confidential support. www.chsbelgium.org/