Q&A: Depression and Parkinson's

Professor Richard Brown joined our discussion forum in November 2012 for a question and answer (Q&A) session on depression in Parkinson's.

Richard (pictured right) is a clinical psychologist and researcher who specialises in depression and other psychological problems in Parkinson's. 

Read the questions submitted and Richard's answers below.

About depression and Parkinson's

Depression is usually diagnosed when someone has feelings of extreme sadness or emotional emptiness for a long period of time. These feelings can affect a person's ability to carry out day-to-day activities.

The symptoms of depression can include the following:

• lack of interest or pleasure
• low energy and tiredness
• trouble sleeping
• decreased sexual energy
• feelings of worthlessness
• in severe cases, thoughts of death or suicidal ideas

But there are also other symptoms that can indicate that someone has depression.

Depression in people with Parkinson's may be due to a number of causes. Some research has suggested that a lack of the chemical dopamine which causes the symptoms of Parkinson's can also be a trigger for depression.

Depression can be related to genetics or can be a side effect of Parkinson's drugs. Because of the range of possible causes, it is important that you speak to your healthcare professional.

Transcript of the session

Daniel: My father was diagnosed with Parkinson's approximately 10 years ago. He has physical problems (which are compounded by his age perhaps), but he is often depressed - bleak, lethargic, non-communicative, and so on.

He has agreed now to see a therapist of some kind to talk about this side of his Parkinson's but, before embarking on that path, I'd like to know what they might consider.

My father is 83 and frail. Many thanks.

Richard: I am pleased that your father has agreed to see a therapist.

Evidence-based therapies such as cognitive behavioural therapy (CBT) for depression can be effective in older adults. The challenges and problems faced by older depressed people, particularly those with significant physical conditions, can require some modification of how CBT is used compared to younger adults.

CBT is an active treatment that involved practical 'homework' between the sessions. Often, family members will be involved to help the older depressed person with this aspect of the treatment, particularly if they are frail and need care anyway.

It is therefore desirable that your father is seen by a therapist that specialises in working with older adults or others with a chronic health condition. However, even if that is not possible, a good therapist will adjust the treatment to suit the individual.

Linda: When I was diagnosed, I was told that clinical depression is very common in people with Parkinson's, because of a chemical change that happens in our brains. Is this true? If so, can you explain more?  

Richard: Depression (sometimes called clinical depression) needs to be distinguished from periods of low mood that everyone gets from time to time.

Depression is marked by the fact that the symptoms are persistent (lasting for days, weeks or months with only brief periods of respite). And they have an effect not just on how the person feels, but on wider aspects of their life such as how well they look after themselves, their ability to work or carry out day-to-day routines, their enjoyment of hobbies and pastimes and their willingness to socialise and be with other people.

It is certainly true that depression is common in Parkinson's. Estimates vary but perhaps 20-25% will be depressed, with more experiencing periods of low mood.

Many factors will contribute to depression and may help explain why some people with Parkinson's get (and stay) depressed and others do not.

The chemical changes in Parkinson's are certainly one factor although we do not fully understand which of the brain changes are most important.

It is unlikely to be the same chemical changes that cause the motor (or movement) symptoms as not everyone with Parkinson's gets depressed and the drugs for the motor symptoms tend not to help depression.

There may a number of different brain changes that can cause depression in Parkinson's. This may explain why there is no single antidepressant that seems to be effective for all people. However, it is unlikely that brain chemical changes are the only cause.

Rates of depression are elevated in virtually all groups of people with a chronic and progressive physical health condition. People vary in how well they are able to adapt and cope with the restrictions and this will also contribute to whether they become depressed.

While antidepressants and other drugs may help the brain changes, it is also possible to do things to help with the process of adjustment to living with Parkinson's - how we think about the condition and its problems and how we live our lives.

This is what psychological therapies such as CBT aim to do. I will talk more about CBT in answering some of the other questions.

Anonymous: Is there a link between Parkinson's and depression?

Richard: See my answer to Linda above.

There is a definitely a link between depression and Parkinson's although it is not a simple or straightforward one and is poorly understood.

Firstly, there are those people who develop depression later in life (after the age of 55). They seem to be at greater risk for developing Parkinson's some years later than other people the same age.

This suggests the possibility that late-onset depression may be an early sign of Parkinson's itself before the motor symptoms appear.

However, many people with Parkinson's who get depressed have also suffered from depression earlier in their life, from their 20s or 30s onwards, sometimes repeatedly. For such people, prone to depression, it may re-occur in response to particularly difficult and stressful life circumstances.

For such people, the practical challenges of Parkinson's and its impact on their life may sufficient to explain why they become depressed, rather than particular brain chemical changes related to the condition.

This may also explain why some people get depressed even though their Parkinson's is very mild - because they change the way they live (in an unhelpful way) and how they see their future (negatively), even though the symptoms are well-controlled.

Nick: I have suffered periods of severe depression (suicidal thoughts) for about 40 years. I was diagnosed with Parkinson's only 4 years ago. I think it is unlikely there is a connection but what is your view?

Professor Brown: My answers to Linda and anonymous above can help to answer your question.

Depression is very common with about 20% of all adults experiencing depression at some point in their life. The vast majority of them do not go on to develop Parkinson's, so the two conditions are probably unrelated for the majority of cases. The exception is when depression appears for the first time late in life with no obvious cause. However, this is not the situation in your case.

You do not say whether you have been depressed since developing Parkinson's. However, anyone with a history of depression before a Parkinson's diagnosis is at greater risk of becoming depressed as they live with the condition.

It is therefore important for you, your family and your healthcare professionals to be alert to any early signs of depression and seek help early before it develops into a full-blown episode.

David:  I have Parkinson's, I'm 47 and always lived my life as a 'glass half full' sort of guy. I was diagnosed 4 years ago and took the news well. However for the last 2 years I've been depressed, even suicidal most of that time.

I was on citalopram but now mirtazapine 45mg and my mood has improved from 0 to 3/10. I take Madopar 4 times a day. I'm about to start counselling but don't see how this will work as they can't change my reality.
 
Are there antidepressants that are particularly recommended for Parkinson's?
Is counselling effective? CBT? Positive thinking?Should my councillor be expected to understand Parkinson's?

What else can I do to beat this severe depression which is so out of character?

Professor Brown: Antidepressants can certainly be helpful for depression in Parkinson's.

There is not enough evidence yet to recommend one type of antidepressant over another. Many people, with or without Parkinson's, may need to try a couple of different types before they find one that works, and to find the right dose.

Your doctor should check how you are getting on with any tablets after 4-6 weeks and if they are not helping adjust the dose or try a different type. I would say that the 3/10 benefit that you are getting is not good enough.

Antidepressants and psychological approaches are not simple alternatives. Often they work best in combination. Counselling and therapy are different, and within each there are several different 'flavours'. Both can be useful and some people prefer one approach over the other. It is good to find out what is available to you.

As with medication, there is no 'one size fits all'. Having a therapist or counsellor with experience of Parkinson's is useful but not essential. They may have experience of helping people with other long-term life changing physical health problems which they can apply readily to Parkinson's.

Psychological approaches such as cognitive behavioural therapy (CBT) have been more extensively tested than counselling approaches and tend to be recommended more by bodies such as NICE. CBT is problem-focused and looks to identify the things that are maintaining the problems rather than trying to identify underlying causes.

This includes things such as how you think about your problems now and for the future(cognitions) and the things you do or don't do (behaviour) in response to the Parkinson's.

While it can't change the 'reality' of the fact that you have Parkinson's, it can change how you perceive that reality - something that you can control. CBT seeks to help to learn new and more useful ways of thinking and behaving to reduce the depression.

A lot of CBT is common sense (or should be). Depression tends to make people think in a depressed way ("everything is awful, the future is bleak, I cannot do anything"). It also makes us minimise the good things that happen and magnify anything bad. This means that a depressed person often ignores or forgets things that happen in their day that is positive.

Simple things that you can do for yourself include keeping a record (a 'positive data log'). At the end of the day - or during the day - write down 3 things that you have done or 3 positive things that have happened, something that you have enjoyed or been pleased with. It doesn't matter how trivial.

By writing them down you are more likely to remember them with all the bad stuff that is also happening. Also, knowing that you have to have something to write down makes you become more aware of the small positive day-to-day things that might otherwise be ignored. This will not cure the depression on its own but it's a small tool in the armoury.

Other things that you can do without therapy is keep active - mentally and physically. This is hard for someone with depression as their motivation is typically poor, they feel more tired and tend to make excuses why they should not/could not do something. But doing something each day - however small - is better than nothing.

Build up your activities and try to do things that can give you some satisfaction. If your Parkinson's is stopping you do things that you used to enjoy, try to find an alternative including something new that the condition allows, eg swap golf for indoor bowls.

These are all things that a CBT therapist will help you with but which you can also do on your own. Having family and friends encourage and support you (and not take no for an answer) also helps.

Finally, I am glad that you have been an optimist as this a good sign for the future. However, optimists sometimes have a tendency to cope by saying things such as "it could be worse", "things will work out OK in the end" etc. In other words, while they do not let things get them down, they also may fail to deal with problems that can gradually build up and overwhelm them.

Getting back in touch with your optimism and using it in a constructive way is something that a good therapist should be able to help you with.

Titan: This may sound rather odd. I have had depression and other psychological/behavioural/emotional issues well before my Parkinson's diagnosis. These issues have certainly become magnified since my Parkinson's diagnosis 3 years ago.

Even taking my medication out of the equation, I can still have extreme mood swings, especially the lows. I suppose my behaviour became magnified on the dopamine agonists.

I am at a point now, the very edge of a precipice. I have just started cognitive behavioural therapy (CBT) but doubt its effectiveness. The circle of woe can be interrupted periodically, but the emptiness, uselessness, negativity and my wasted/wasting life are not easily brushed under the carpet.

Can things reach a point or go beyond a point where a person like myself is beyond all help? I have annoyed many people, who feel frustrated because I can't buck myself up out of my turmoil or seem self absorbed.

Do depressed people become self absorbed? Is it an easy way out rather than facing things head on? I don't think I can ever shake off my feelings and I am sorry to all those people who have tried to help me. I have let so many down and am deserving of their scorn.

I am in a hole that I can't get out of and really don't know who or what I am any more. Self harm,drinking and all sorts of strange things I do.

Is Parkinson's the final nail in the depressive coffin? Just random thoughts, I expect no answers where there are none to be found. Thanks.

Richard: Titan, you are the first person to mention highs as well as lows. While people with depression can describe periods of time where they may feel 'OK', 'not so bad’ or even have normal mood, they tend not to describe these as highs, or describe extreme mood swings.

If the mood swings and the highs are something new to you (rather than the depression which you describe as a long standing problem) they could relate to your Parkinson's or the treatment that you are receiving. Make you sure mention these to your neurologist.

If you are receiving medication for your mood, some types are better suited to helping people that have periods of highs and lows that you describe. A psychiatrist would be the best person to advise.

You describe very graphically how you feel on the edge of a precipice. This is the depression talking. Depression affects how we think about ourselves (such as the guilt and self-blame that you describe), the world about us and the future.

It is this hopeless, self-punishing bleakness that makes depression so distressing and disabling. However, what is important to remember is that this point of view is not a reflection of any current or future reality - it is your situation seen through the distorting lens of the depression. Just because they are your thoughts it does not mean that they are correct, accurate or helpful.

The correct medication can help reduce these feelings and mood changes, and therapies such as cognitive behavioural therapy (CBT) can tackle head on the distorted thinking patterns that depression causes.

It is understandable, feeling how you do now, that you have little confidence in CBT - you probably have little confidence in anything being able to help you. However, CBT can and does work. But it takes time and effort. The more you put in to it, the more you get out.

A good therapist will accept your scepticism if you acknowledge it, and find ways for you to change your opinion. They will guide you to try out alternative ways of thinking and behaving as 'experiments' to see if they do any good. Progress can be slow and gradual, but once you see that you can influence your negative thoughts and improve your mood - even in a small way - rather than being its victim, you can start making real progress.

Finally, you mention self-harm and drinking. It could be that these are features of your depression and will respond to treatment. However, it is also possible that are features of impulsive behaviour linked to your dopamine agonist medication and worsened by your depression.

Make sure you discuss these with your neurologist at your next appointment. You should also be alert to changes that may accompany any future increase in your agonist dose.

Alison: At what point might you consider ECT in someone with depression as a predominant feature of their Parkinson's?

Richard: It may seem old fashioned but there is excellent clinical trial evidence that ECT (electroconvulsive or electroshock therapy) can be an effective and life-saving treatment for severe depression in people without Parkinson's.

How it works is less unclear. In Parkinson's, while there have been no clinical trials, there are good anecdotal clinical reports of it being effective for some people with severe depression.

However, whether in people with Parkinson's or without, ECT is reserved for the most severe forms of depression as an emergency treatment when the person is threatening to take their own life, refusing to eat or drink or is suffering severe delusions with their depression. Typically it is only recommended when the depression has proven impossible to treat effectively with other methods.

Just because drugs do not seem to help does not mean that ECT is necessarily the next step. Many people who have chronic persistent or recurring depression may not be receiving optimal conventional treatment. They may be on the wrong drugs at the wrong dose, and alternative forms of treatment including psychological treatment may not yet have been tried.

Severe chronic and treatment-resistant depression should be managed by specialist psychiatric services, rather than through a GP or even a neurologist.

emswife: I often find myself starting to cry for no reason. It goes as quickly as it comes, but it's embarrassing as I'm often in company, but I feel genuinely depressed at the time. Is this just me or my medication or Parkinson's?

Richard: If you did not also have low mood at the time, it could be that you are describing something called psudobulbar affect (PBA). This is where people with a neurological disorder find themselves crying or laughing uncontrollably without cause and without the corresponding emotion.

Although more common in some neurological conditions it has been reported to occur in as many as 5% of people with Parkinson's, more in those who also experience depression.

Not all people who are depressed cry but many do - it is one of the symptoms of depression (interestingly some people who are depressed feel unable to cry which can feel as bad).

We normally associate periods of crying with feeling particularly sad or upset. However, crying is a very complex thing and can have lots of triggers, particularly if someone has a low 'crying threshold'.

You may find yourself crying if people are being nice to you or sympathetic, when looking at a picture that brings back a happy memory, or when feeling angry or frustrated. These are all natural situations in which people will cry when their mood is low, even if they are not particularly sad at the time.

Try not to worry about the crying. Seek help for your mood and the crying should diminish.

David: What biochemical role or pathway is significant with exercise and depression? Which is cause and which effect? Does depression cause apathy and reduced exercise? Or does less exercise cause depression?  Which comes first? Chicken and egg.

Richard: Good questions to which there is no good scientific answer.

Physical exercise can cause the release of mood lifting chemicals such as endorphins into the blood (the cause of 'runner's high') but it is not clear that these are responsible for any longer term benefits of exercise on mood. Cardiovascular fitness increases blood supply to the brain both during exercise and afterwards and this may help as well.

However, the benefits of exercise may be less direct. When we are depressed we start doing less, including physical activity. We feel demotivated and fatigued and we then do even less and feel even worse.

Very quickly a vicious cycle builds up with the depression and lack of physical activity feeding each other (chicken <-> egg). To make matters worse if we are less active we have more time to sit at home and think - the last thing a person with depression should be doing.

Starting a graded programme of physical activity is one excellent way to break that cycle and start to reverse it - by taking exercise you are 'fighting back', doing something that makes you feel a bit better at the time. Having more energy allows you to do other things that you want to do and which help further.

However, any form of activity that gets you out of the house, doing things and being more engaged with the people and the world would also be good.

For people that enjoy it, physical exercise is great for its own sake and for depression but it is not the only type of activity that is helpful and is seldom the solution on its own.

jeremy10: I was diagnosed in 2006, and get depressed about feeling disabled. I had a negative reaction from citalopram 2 years ago. CBT was very helpful 2 years ago. Should I go for more talk therapy? My consultant seems to think so.

And is depression endemic in Parkinson's?

Richard: You describe a classic response to a diagnosis of Parkinson's.

It is very common for people given a diagnosis of a chronic condition to suffer a negative reaction such as yours. It is not the symptoms themselves (which in the beginning are mild and easily treatable) but the personal meaning of 'having Parkinson's' or 'being disabled' that does the damage, or their expectations and fears for the future. People can experience all sorts of negative feelings from shame to thoughts that their life is as good as over.

After depression is triggered by something like the diagnosis, some people recover well as they learn more about Parkinson's and realise that it does not justify their worst fears. Others can need some extra help.

You describe CBT as being very helpful then, but you find yourself depressed again. This is very normal.

While cognitive behavioural therapy (CBT) teaches you to spot and challenge patterns of negative and unhelpful thinking associated with depression, many people 'get rusty' and stop using the skills that CBT has taught them. I agree with your consultant that having a top-up course of treatment would be useful.

However, some people with recurring depression find that a slightly different approach is helpful to maintain the benefits in the long-term. A modified type of CBT called mindfulness-based CBT (mCBT) is proving effective in preventing relapse. It is also increasingly used in individuals with chronic physical health problems where its techniques seem particularly appropriate.

mCBT is becoming more widely available and it is worth discussion with your therapist whether it is an option.

In relation to your last question, depression in Parkinson's is certainly common but it is not inevitable or endemic.

anonymous: I have experienced depression with Parkinson's for a few years. I have also experienced some difficulties thinking clearly. Can you comment on the likelihood of clouded thinking being caused by depression, by Parkinson's or by medication (Sinemet Plus and ropinirole)?

Richard: Depression is a very complex condition. Apart from the obvious changes to mood, reduced motivation and less ability to enjoy things, it can affect a person's sleep and appetite, cause fatigue and even pain. Problems with concentration and memory are also classic features of depression.

If the thinking problems started at the same time as other depression symptoms it is likely that they are part of the depression itself, or the depression is making mild problems worse.

However, as you indicate from your question, problems with thinking clearly might be a symptom of your Parkinson's or made worse by your medication. Being on too low a dose of medication can affect your thinking, but too high a dose can make it worse as well.

The best place to start is to make sure that you are getting the best possible treatment for your depression, whether from medication, CBT or both. Talk to your consultant or GP to review your current treatment and see what else is available.

If your thinking problems persist even if your depression improves, you should talk to your consultant. He or she may arrange for you to have some tests before deciding whether any adjustment in your medication is needed, or additional treatment justified.

anonymous: Are there any special considerations when treating depression alongside Parkinson's or are the same treatments equally valid?

Richard: Some types of the older antidepressants are not advised for use in Parkinson's or for people with other physical health problems. This can be because of the risk of an interaction with the Parkinson's medication or other adverse side effects and health risks.

However, most of the common modern antidepressants used today for treating depression can be used for depression in Parkinson's. They are generally felt to be safe and do not make the Parkinson's worse. Your consultant or GP should know what to advise.

What is less certain is how well they work. While many people find them extremely effective, others appear to get no benefit at all. However, this is probably nothing to do with Parkinson's or its treatment. Depression is a very complex condition with multiple causes.

About half of people without Parkinson's who have depression fail to respond to antidepressant drugs. We do not know why this is. Where one class of drug does not seem to be working, doctors should try a different class until hopefully finding one that is effective.

Alternatively (or in addition) they may recommend a psychological treatment such as CBT. Like drugs, it is more effective for some people than others. However, one of the good things about CBT is that there is no worry that it will make the Parkinson's worse or interact with the Parkinson's medication.

About Professor Richard Brown

Richard trained as a clinical psychologist in 1982 and since that time has worked as a clinician researcher focusing on Parkinson's.

He worked first at the Institute of Psychiatry and later at the Medical Research Council's Human Movement and Balance Unit before returning to the Institute of Psychiatry in 1998, where he now leads the Department of Psychology.

His research has covered all aspects of Parkinson's - cognitive and movement problems, depression and other psychological problems, in both those with Parkinson's and their partners.

Most recently Richard has been leading a major programme of research funded by Parkinson's UK into depression and anxiety in Parkinson's (the PROMS-PD study) which is advancing our understanding of these important problems.

• email
• Share