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1 Depression

2 We hope you find the information in this factsheet helpful. If you would like to speak with someone about any aspect of MS, contact the MS Trust information team and they will help find answers to your questions. This factsheet has been provided free by the Multiple Sclerosis Trust, a small UK charity which works to improve the lives of people affected by MS. We rely on donations, fundraising and gifts in wills to be able to fund our services and are extremely grateful for every donation received, no matter what size. MS Trust information service Helping you find the information you need The MS Trust offers a wide range of publications, including a newsletter Open Door, which provides an ongoing update on research and developments in MS management. In addition it contains articles from people with MS and health professionals. For a full list of MS Trust publications, to sign up for Open Door and much more visit our website at phone (from a mobile) (Lines are open Monday - Friday 9am-5pm) write infoteam@mstrust.org.uk MS Trust Spirella Building Letchworth Garden City SG6 4ET Reg charity no

3 Depression Date of issue: March 2015 This factsheet will be reviewed within three years Contents Introduction 2 1. What is depression 2 2. What are the symptoms of depression? 3 3. How does depression impact on daily life? 3 4. What causes depression? 4 5. What causes depression in MS? 4 6. How is depression diagnosed? 5 7. How is depression treated? Self-management Talking therapies Cognitive behavioural therapy (CBT) Counselling Drug treatment St John s wort 8 8. Severe complicated depression 8 9. Recurrent depression How can friends and family help? Sources of support Useful organisations References 11 1

4 Introduction Depression is common in the general population but research suggests that people living with long-term conditions, including MS, are at greater risk. It is estimated that about half of all people with MS will experience an episode of depression at some time regardless of the type of MS they have 1. Clinical depression can be difficult to identify and people with MS themselves may not always recognise it. It can be hard to talk about feelings and the stigma associated with mental health problems may also be a barrier to discussion. Family and friends can play a key role in helping to identify or recognise depression. Health professionals rely on descriptions of the symptoms to make a diagnosis and identify the best approach to treatment. Some facts about depression: depression is common in MS it is not unusual or a consequence of personal actions help is available from your MS specialist nurse, MS specialist clinic or GP depression is treatable, and can be managed successfully. There are effective approaches to treating depression and the person experiencing this should be fully involved in decision making at every point. 1. What is depression? Everyone feels sad at times. Depression is different in that it is constant and interferes with normal everyday activities. People with depression often lose pleasure in things that were once enjoyable and may give up usual activities such as hobbies and lose interest in seeing friends and family. Some people even feel that life is no longer worth living and may have thoughts of ending it all. Depression may be mild, moderate or severe and a person may experience different levels of depression at different times 2. Mild depression is when a person has a small number of symptoms that have a limited effect on their daily life. Moderate depression is when a person has more symptoms that can make their daily life much more difficult than usual. Severe depression is when a person has many symptoms that can make their daily life extremely difficult. 2

5 2. What are the symptoms of depression? The symptoms of depression are many and varied and recognising depression when you have MS can be difficult. Many people may already experience symptoms that are usually associated with depression such as fatigue, constipation, poor concentration and sleep problems 3. The important thing to focus on are changes, and changes in outlook including: low mood all the time and in every situation for at least two weeks negative thoughts about yourself and the future which might not be related to the level of disability that you experience not being able to take pleasure in routine things such as eating, watching TV or talking to friends that you have previously enjoyed thoughts of suicide. It has also been suggested that in MS, depression causes increased problems with thinking; and feeling irritable, frustrated and discouraged can be part of depression. Worsening of MS symptoms that someone already has, in the absence of infection or relapse, and deepening of fatigue could also be flags for concern. 3. How does depression impact on daily life? Describing the symptoms of depression cannot capture its enormous impact on daily life. It affects many aspects: personal, social, and professional. Without the right help depression can spiral out of control becoming a serious threat. It is important to speak to a GP, other health professional or a trusted person at the earliest opportunity. Withdrawal from intimate or social relationships can be misunderstood by others as rejection or disinterest. Friends, relatives and carers of people with depression are not always able to recognise that this is due to the condition. This might lead to a lack of empathy and sensitivity towards the person with depression. This, in turn, can feed into the depression and social withdrawal. 3

6 Depression can interfere with the ability to concentrate, which may affect work performance. Without the understanding and insight of work colleagues, this reduced performance may be perceived as laziness or incompetence. Depression is often accompanied by feelings of despair, uselessness and lack of self-worth which can result in self-neglect. People stop caring for themselves in the way they usually would, and this can mean people stop taking prescribed medication and following a healthy lifestyle. This can result in deterioration of health and complications or a worsening, of MS symptoms. Because of the impact that depression can have on an individual, and the management of their MS, it is important to seek help. 4. What causes depression? The causes of depression are not fully understood, but it is thought that an imbalance in brain chemistry causes a drop off in mood. Anyone can develop depression at any time in their lives without any apparent cause or reason. It is not an inability to cope with life, nor is it a weakness or failure of any sort. Some people are more at risk of developing depression. For example: people living with a long-term condition; people who experience a stressful life event such as a relationship break-down or bereavement; people with a family history of depression; women who have recently given birth; people who are socially isolated; and people with drug or alcohol addictions. 5. What causes depression in MS? For people with MS, in addition to the factors for the general population, the challenges of living with an unpredictable and potentially debilitating long-term condition can also be a trigger factor for depression. Other contributing factors might include symptoms such as chronic pain and overwhelming fatigue, or the social isolation that disabilities can bring. Depression can also be due to MS itself, where lesions in certain parts of the brain directly alter mood and can therefore cause depression 4. Drugs prescribed for MS might, in some instances, contribute to depression. Cases have been described with corticosteroids used in the treatment of MS relapse, beta interferons (disease modifying drugs) and muscle relaxants. 4

7 6. How is depression diagnosed? Depression is often diagnosed by a GP, and a person may recognise it themselves or their family or close friends may notice a change. Other health professionals with whom they have contact, such as a neurologist, may also make a diagnosis of clinical depression. Depression is diagnosed from a person's own account of their feelings and symptoms. There is no scan or blood test to help. Health professionals look for certain key themes in what people say and start to think about depression when people describe low mood on most days, for most of the day, over at least two weeks. Having MS may make diagnosing depression more difficult because many common MS symptoms, such as fatigue and reduced concentration, are also associated with depression. It is important to focus on changes in a person's outlook, which is why it is important that health professionals also listen to what friends and family tell them. Two simple questions have been devised to establish if someone is depressed 5,6. During the last month have you often been bothered by feeling down, depressed or hopeless? During the last month have you often been bothered by having little or no pleasure in doing things? If the answer is 'yes' to either of these questions, it is important that you speak to your MS specialist team or GP. It is not usual to feel low all the time. 7. How is depression treated? There are a number of approaches to treatment which depend on the severity of depression and these are often used in combination. Other factors such as an individual s treatment preferences, sources of support, and past history of depression are also taken into consideration. Treatment for depression should be approached in the same way one might approach treatment of a physical injury. A broken leg, would be given time to heal. This approach should also be used to restore the mind and emotional 5

8 wellbeing following an episode of depression and this can take many weeks or months. Referral may also be made to a neuropsychologist, where they are part of the MS team, or to other members of the mental health team. 7.1 Self-management In mild to moderate depression, self-management is the approach recommended by the NICE guidelines 2. This may include advice on increasing levels of physical activity 7, accessing self-help groups, adopting a healthier lifestyle, minimising stress, practising sleep hygiene, relaxation techniques or mindfulness 6,8. This should be reviewed by the health professional to ensure that mood is improving. 7.2 Talking therapies Talking therapies or psychological approaches aim to help people identify and overcome negative thought patterns associated with depression. These include cognitive behavioural therapy (CBT) and would usually be recommended in mild to moderate cases of depression. Access to psychological therapies is currently limited on the NHS Cognitive behavioural therapy (CBT) CBT is based on the idea that the way people think about a situation affects how they act. In turn, actions can affect how people think and feel. It is therefore necessary to change both the act of thinking (cognition) and behaviour at the same time. Cognitive behavioural therapy has proven effective in treating less severe cases of depression in MS 9. CBT emerged out of two types of psychotherapy: cognitive therapy - designed to change people's thoughts, beliefs, attitudes and expectations behavioural therapy - designed to change how people act. A course of CBT is typically comprised of 5-20 weekly sessions, with each session lasting between minutes. A programme of CBT can be given individually, or as part of a group; and it may be delivered by a trained CBT therapist or as a computer-based programme. CBT is available on the NHS and a GP should be able to give further information about how to access it 6

9 locally. There may be limited resources or a long waiting list in some areas, but it can also be accessed through private CBT counsellors Counselling Counselling is a form of therapy that helps people to think about the problems they are experiencing in their lives and to identify ways of overcoming or managing them. Counselling differs from other forms of therapy in that the counsellor is more passive. Counsellors can often be accessed through local MS Therapy Centres. Other talking therapies include psychotherapy, family therapy, couples therapy, and group therapy. 7.3 Drug treatment In moderate to severe cases of depression, or where previous treatment approaches have not been effective, antidepressant medication may be recommended. Health professionals will generally prescribe the lowest possible dose of a particular drug that is expected to improve symptoms 10. The effects of antidepressants usually take around four weeks to take effect. It is important not to give up too early, but to give the medication a chance to work. The particular drug or dose prescribed in the first instance will be regularly reviewed and possibly changed if it is not effective, or its side effects prove intolerable. Some people may start to feel better after a short period of time, but it is important not to stop taking the antidepressants without talking to the GP. Stopping a course of antidepressants before the recommended treatment duration could result in the depression coming back. Antidepressants The drugs to manage depression vary in the way they work, but they all act by increasing the levels of neurotransmitters in the brain. Neurotransmitters transmit signals between brain cells and some, such as serotonin and dopamine, are thought to boost mood. The most commonly prescribed type of antidepressants are selective serotonin re-uptake inhibitors (SSRIs) and include fluoxetine (Prozac) and 7

10 paroxetine (Seroxat). Amitriptyline (Triptafen) and imipramine may be used to treat moderate to severe depression and are also used in lower doses in MS to treat neuropathic or nerve pain, even if there is no depression. 7.4 St John s wort St John's wort (hypericum perforatum) is an unlicenced herbal remedy that has been shown to be effective in treating depression. However, the current NICE guideline 2 does not recommend its use because of ongoing concerns about appropriate doses, duration of effect, variation in preparations and the potential for serious drug interactions. It can also counteract the effects of warfarin and oral contraceptives. It is important that the GP and MS nurse know if St John's wort is being taken. 8. Severe complicated depression Rarely, where a person has persistent and repeated episodes of severe depression resulting in severe self-neglect, or is believed to constitute a major risk to people close to them, standard treatments such as antidepressants or talking therapy may prove ineffective. In such cases, people may be referred to specialist mental health services and receive a tailored programme of specialist medicines and treatments in either an inpatient or outpatient setting. These often have a positive result and are managed in association with the MS specialist team. 9. Recurrent depression People who experience depression can find that it recurs and it is important to continue taking prescribed antidepressants. It is also helpful to learn some skills that can help in preventing relapse. Keeping a diary can be helpful for monitoring sleeping patterns or other changes. If a doctor feels that someone is at significant risk of a relapse of depression, they may be referred for psychological therapy based on CBT. This could consist of individual face to face CBT or mindfulness based CBT. 8

11 10. How can friends and family help? Friends, family and carers of people coping with depression can play an important role in the diagnosis and management of the condition. The person with depression may not always recognise changes in their mood or behaviour until someone else points it out. If you are worried that a person with MS you know might be depressed, it is important to approach the subject with sensitivity and understanding. Being receptive towards any changes in mood or behaviour and encouraging people to talk to their GP, MS nurse or other health professional is an important way of supporting somebody who has depression. 11. Sources of support Depression can be very lonely and isolating, but it is a recognised and treatable condition. There are support structures and services in place to help people overcome it. Sources of support available to people who are depressed include local selfhelp groups, telephone counselling services, online discussion forums and mental health charities offering information and support. 12. Useful organisations Depression Alliance Provides information and support and co-ordinates a network of self-help groups. Website: Depression UK A self-help organisation made up of individuals and local groups. Website: MIND Provides confidential help and advice on a range of mental health issues. Website: Infoline:

12 Rethink Offers support to people affected by severe mental illness. Website: Infoline: Samaritans Provides confidential emotional support, 24 hours a day for people who are experiencing feelings of distress or despair. Website: Telephone: SANE Provides emotional support and information for anyone affected by mental illness. Website: Helpline Self-help websites: Living life to the full Living life to the full is a free online lifeskills course based on CBT. It has modules that help people to understand why we get depressed or anxious, and covers skills such as recognising and challenging unhelpful thoughts, anxiety management, overcoming reduced activity. It can be done with the support of your family or local practitioner. Get Self Help A website that offers CBT self-help information and resources. 10

13 13. References 1. Feinstein A. Multiple sclerosis and depression and multiple sclerosis. Multiple Sclerosis 2011;17(11): National Institute for Health and Clinical Excellence. Depression in adults with a chronic physical health problem. NICE Clinical Guideline 91. London: NICE; Patten SB. Diagnosing depression in MS in the face of overlapping symptoms. International MS Journal 2010;17(1): Kiy G, et al. Decreased hippocampal volume, indirectly measured, is associated with depressive symptoms and consolidations deficits in multiple sclerosis. Multiple Sclerosis 2011;17(9): National Institute for Health and Clinical Excellence. Depression: the treatment and management of depression in adults. NICE Clinical Guideline 90. London: NICE; Minden SL, et al. Evidence-based guideline: assessment and management of psychiatric disorders in individuals with MS: report of the Guideline Development Subcommittee of the American Academy of Neurology. Neurology 2014;82(2): Ensari I, et al. Exercise training improves depressive symptoms in people with multiple sclerosis: results of a meta-analysis. Journal of Psychosomatic Medicine and Research 2014;76(6): Simpson R, et al. Mindfulness based interventions in multiple sclerosis a systematic review. BMC Neurology 2014;14: Askey-Jones S, et al. Cognitive behaviour therapy for common mental disorders in people with multiple sclerosis: a bench marking study. Behaviour Research and Therapy. 2013;51(10): Koch MW, et al. Pharmacologic treatment of depression in multiple sclerosis Cochrane Database of Systematic Reviews 2011:Issue 2: CD Please contact the MS Trust Information Team if you would like any further information about reference sources used in the production of this publication. 11

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