CARING FOR A LOVED ONE WITH AN EATING DISORDER (PDF)

CARING FOR A LOVED ONE WITH AN EATING DISORDER A Carer’s Guide to Understanding the Illness and Keeping Well 1st Edition (January 2015) Anna Toovey Program Assistant Professor Richard Newton Medical Director Mental Health, Austin Health Professor David Castle Chair of Psychiatry and Consultant Psychiatrist  2 Authors’ Note Sections of the material in this booklet have been borrowed from the ‘Anorexia Nervosa Workbook’. The workbook was developed at the Body Image & Eating Disorders Treatment & Recovery Service (BETRS) by Dr Suzy Redston. In addition, some of the materials in this booklet are adapted from the Optimal Health Program (OHP), a self-management program which promotes hope, growth and partnership. Frameworks for Health (FFH), St Vincent’s Hospital Melbourne (SVHM), has been dedicated to translating the OHP into everyday clinical practice through program development, research and training. The team was formerly known as the Collaborative Therapy Unit (CTU), based at the Mental Health Research Institute. There are points throughout this booklet where statements or stories from our contributors have been included. The names of all individuals have been changed to protect the identity and respect the privacy of those who have shared so thoughtfully. Cover Art: “Untitled” Artist: Helen Wilding Helen Wilding is an artist and Research Librarian at St Vincent’s Hospital in Melbourne. This artwork contributes to the Caring Together Art Journal Project, a project that aims to help carers, consumers and practitioners to work together by starting a conversation, sharing different viewpoints, promoting mutual respect and understanding, and brainstorming how we can work together to support recovery. DISCLAIMER The information contained in this booklet is not intended to be a substitute for medical care. Decisions regarding treatment are complex medical decisions requiring the independent, informed decision of an appropriate health care professional. Reference to any medication or substance does not imply recommendation by the authors who accept no responsibility for any clinical untoward event that may arise from following the recommendations contained herein.  3 Acknowledgments We would like to extend our sincere thanks to all those who contributed to the production of this booklet, in particular, Ms Philippa Harrison (Team Leader BETRS Community) and Ms Lynne Ruggiero (Family and Carer Consultant, Austin Health). We would also like to thank the people living with an eating disorder, their loved ones, and the clinicians who work with them, for generously sharing their very personal stories with us. Their experience is integral in sculpting supports that are relevant and valuable for people with a loved one with an eating disorder. The names of individual contributors have been changed to protect the identity and respect the privacy of those who have shared so thoughtfully.  4 CONTENTS Who is This Booklet For? 6 Being a Carer 7 Carer Rights 9 Early Detection and Diagnoses 11 What is an Eating Disorder? 13  Anorexia Nervosa 14  Bulimia Nervosa 15  Binge eating Disorder 16 Insight 17 Health Consequences of Eating Disorders 18  Physical changes 18  Psychological changes 19 What Can Accompany an Eating Disorder? 20  Depression 20  Anxiety 21  Personality Disorders 22  Substance Abuse 23 What Causes an Eating Disorder? 24  Psychological factors 24  Interpersonal factors 26  Social factors 26  Genetic and biological factors 27 Common Triggers of Eating Disorders 28 What Maintains an Eating Disorder? 30 Anorexia and the Internet 32  5 How is an Eating Disorder Treated? 33  Nutritional assessments 33  Workbooks 33  Meal plans 34  Social eating challenge groups 36  Psychological therapies 36  Medication 39 Understanding Change 40 Communication Skills 41 Self harm and suicidal thoughts 43 Making a Safety Plan 46 Consent and Privacy 49 Pregnancy 50 Relationships 51  Staying connected 51  Collaborative partners 52 Caring for yourself 55  The importance of sleep 57  Managing stress 59  Time to yourself 62  Grief 64  Carer Support Groups 65 Further Resources 66 References 68  6 Who is This Booklet For? This booklet was written to support people with a loved one who have been diagnosed with an eating disorder. It aims to share practical information about the diagnosis, and offer advice about handling common experiences that can go along with it. When caring for a loved one who is diagnosed with an eating disorder it can sometimes be difficult to focus on your own physical and emotional wellbeing. This may lead to you feeling stressed or overwhelmed, and can start to impact on your relationships with others. This booklet also shares some strategies for noticing and managing times that you are feeling stressed, so that you can help to maintain the good health of both you and your loved one. If you don’t look after yourself, you won’t be able to look after anyone else. Some parts of the booklet encourage you to reflect on your own experience and write down information relating to your own, or your loved one’s, health. You might like to photocopy these sections as your thoughts and strategies might change over time. Throughout these pages, you’ll also find information that is highlighted and put in boxes like this one. These are the take-home messages that are particularly important to remember. When lives are busy and reading time is limited, these messages may be the easiest to flick to and use as quick reminders. The information in this booklet might lead to you wanting to know more about eating disorders or clarify information that you already know. We strongly encourage you to approach a member of your loved one’s health team with any questions or thoughts that you might have. This can often help you to understand more about your loved one’s illness and can help everyone to tailor care to their needs.  7 Being a Carer Caring for a loved one with an eating disorder can be a very stressful and overwhelming experience. Families and carers often have very intense emotional responses to the situation in which the person they care for is putting their life and health at risk through self-starvation, over exercise or disordered eating behaviours. You might feel a range of different emotions such as worry, anger, guilt, grief, helplessness, resentment, powerlessness, frustration, exhaustion, shame or fear at various points in time. These emotions are very normal; however, managing these emotions will be difficult and may impact on your emotional well-being. Research has found that carers of a person with an eating disorder face a number of distinct pressures and issues as a result of the illness, such as:  Family unification or disintegration. Family units can change as a result of the stress that their loved one’s illness has brought to bear on it. At times families may feel closer, at other times the family unit may feel pulled apart or fractured. ‘I ended up being ‘bad cop’ and my husband ‘good cop.’’ (Rosie, carer) ‘Trips overseas were almost cancelled because my daughter was so unwell and at risk. It’s not fair on the siblings that they miss out because of the eating disorder’ (Jil, carer)  Inability to cope. The emotional pressures experienced by carers sometimes lead to feelings of an inability to cope, or conversely, the burden of a loved one’s illness can damage coping mechanisms.  Inconsiderate comments from significant others. Unhelpful comments made by extended family members or friends can intensify the pressure upon carers and increase carer anxiety. Carers have identified that significant others did not understand the problem they were dealing with. This can lead to the ‘problem’ being kept within the family and result in social isolation. ‘My brother once said “why doesn’t she just eat more?”’ (Anne, carer)  Social Isolation. Carers may isolate themselves from friends, family and health professionals in an attempt to ‘manage’ the situation. Seclusion from others can limit coping resources and deprive parents from sharing the burden.  Financial impacts. Health insurance, hospitalisation and therapy can be financially draining. Such financial concerns can be an additional source of stress. There can also be hidden costs of illness, such as transport costs, time missed at work etc.  8 It is crucial that you are able to talk about your feelings and experiences. Refer to page 55 of this booklet for more information about caring for yourself, and refer to page 65 for a list of support contacts. Try to remember you are not alone. There is help available for you and your loved one. Your experience… Have you and your family experienced any of the issues listed on the previous page as a result of your loved one’s eating disorder? What emotions have you felt? When caring for a loved one with an eating disorder try to:  Get help from others. Seek professional assistance and call on family and friends for help if you need it. Don’t isolate yourself from others.  Take a break. In order to continue to provide help and support to your loved one you are going to need to take some time out for yourself every now and then.  Get enough sleep. Sleep is so important. If you are not getting enough sleep you are less likely to cope.  Join a support group. Talking to other carers who have had similar experiences will help you feel understood and supported.  Be patient. Recovery is absolutely possible but the process can be very slow. The journey to recovery can have many ups and downs. Try to be as calm and patient as possible.  Be compassionate. The best medicine you can give your loved one is showing them that you care. It’s very normal to feel stressed or run down in your caring relationship from time to time. If there are times where you feel overwhelmed or experience symptoms of depression or anxiety, let your own doctor know. They may recommend a short course of individual psychological therapy or medication to help support you through a rough patch. You may also find value in regularly attending a Carer Support Group.  9 Carer Rights Carers are defined as people who provide support and assistance and/or personal care to people with a disability, medical condition (including terminal or chronic illness), mental illness, or frailty due to age. Cares include family members, friends, relatives, siblings, grandparents or neighbours. Cares also include those situations where a person is being cared for in a foster, kinship or permanent care arrangement. All of these people are defined as carers regardless of the amount of care, support and assistance they provide. A person may be considered as having a care relationship without having custody or guardianship. The Victorian Government recognise the contribution family/carers make to the support and care of people with mental health problems and disorders. In 2012 the Victorian Government introduced legislation, Victorian Carers Recognition Act 2012, to ensure the rights and needs of carers were supported. This legislation together with the new Mental Health Act 2014 will direct practitioners to involve and support carers in their caring role. As a carer you have a right to:  Be recognised and respected as an individual, including your cultural identity and language preferences  Be recognised and respected as part of the care relationship  Where appropriate, have a say in decisions about care planning and care  Receive assistance with your own difficulties which may be generated by the process of caring for a person with a mental health problem or mental disorder  Be able to use what the ‘Victorian Carers Recognition Act’ says to support their relationship and use of services  Be provided with comprehensive information, education, training and support to assist their understanding, advocacy and care of your loved one.  Seek further opinions regarding the diagnosis and care of their loved one  Place limits on your availability to the person you care for  Mechanisms of complaint and redress. With the consent of your loved one, carers are entitled to:  Have safe access to the person they care for  Be consulted by service providers about measures under consideration for treatment of their loved one or for his/her welfare  Arrange support services such as respite care, counselling and community nursing facilities  Exchange information with those providing treatment concerning your loved one, their lifestyle and their relationships with others.  10 There may be circumstances where your loved one is unable to give consent or may refuse consent because of their personal choice or disturbed mental state. In such cases it may be appropriate for service providers and carers to initiate contact and involve those who may be able to assist with the diagnosis and care.  Carers have the right to share information concerning family relationships and any matters relating to the mental state of their loved one to health service providers.  Carers have a right to receive information which is reasonably required for the ongoing care of their loved one where the carer will be involved in providing that care. References: Victorian Carers Recognition Act 2012 www.dhs.vic.gov.au/carersact Mental Health: statement of rights and responsibilities http://www.health.gov.au/internet/main/publishing.nsf/Content/mental-pubs-m-rights2 For more information regarding consent and privacy issues please refer to page 49 of this booklet  11 Early Detection and Diagnoses Early detection of an eating disorder can improve the outcome of treatment for your loved one and, in turn, can reduce the impact of the disorder on your loved one and your family. If you are at all concerned that your loved one has an eating disorder you should take them to their local doctor as soon as possible. General practitioners (GPs) play a very important role in the early recognition and ongoing management of your loved one’s eating disorder. There are a number of signs or symptoms that are common to eating disorders that you should keep an eye out for and that your loved one’s doctor will want to know about. For example:  Changed attitude to food and cooking  Avoiding meals  Slow eating/picking at food  Eating in secret  Eating only low calorie foods  Changing food choices  Weight fluctuations  Low mood  Mood swings  Compulsive behaviour  Suddenly developing ‘allergies’ to foods  Medical problems  Menstrual irregularities  Social phobia with regards to eating  Excessive work or training  Poor concentration  Fractures with minimal force  Hypoglycaemia (e.g. ‘dizzy spells’) ‘Looking back, an early warning sign was my daughter talking about becoming a vegetarian.’ (Rosie, carer) Your experience… What are some of the signs or symptoms your loved one demonstrates? Are there any from the list on the previous page? It may be helpful to write them down before going to the GP.  12 When you first visit the doctor he or she may ask your loved one a series of questions about their eating behaviour in order to open up a non-judgemental discussion about food and weight. These discussions will hopefully help the doctor to establish a therapeutic relationship with your loved one. For example, the GP may ask: Has your loved one:  Deliberately tried to limit the amount of food they have eaten to influence their shape or weight? If so, what has the result been?  Gone long periods of time without eating anything at all to try and influence their shape or weight?  Tried to exclude foods from their diet in order to influence their shape or weight? If so, what has the result been? Does your loved one:  Follow strict rules when it comes to eating?  Have a desire to always have an empty stomach?  Worry they have lost control over how much they eat?  Make themselves sick because they feel uncomfortably full?  Think they are fat when others say they are thin? If the GP suspects that your loved one does in fact have an eating disorder they will likely want to carry out a basic physical examination and monitor your loved ones weight, temperature, blood pressure and heart rate. This process will help the GP to engage with your loved one about their illness and assess how their body is responding to the disturbances in their eating behaviour. There is always hope for recovery; however, the earlier the intervention the higher the chance of success. From here your GP should request ongoing contact with your loved one and also assist with arrangements for your loved one to see a dietitian (an expert on diet and nutrition) and a psychologist or psychiatrist (for psychological treatment). Your loved one may also be given a referral to a mental health service or specialist treatment program. These services can provide ongoing support to help restore your loved ones weight, provide psychological treatment and help you and your loved to one to understand why they engage in these behaviours. For more information please see the Treatment section of this booklet (p. 33). Your loved one may be very reluctant to go to the doctor and initially they may be unwilling to change their behaviour. This may make you feel scared, anxious or distressed. These feelings are all very normal. Make sure you talk to your doctor about how you are feeling.  13 What is an Eating Disorder? Eating disorders involve serious disturbances in eating behaviour and psychological issues related to food, eating and body image concerns. Eating disorders are characterised by two key sets of behaviours:  Disturbed eating habits: can include restricted food intake, strict dietary rules, preoccupation with food, and altered mealtime behaviours.  Disturbed weight control behaviours: may involve excessive exercise, vomiting, or the misuse of laxatives or diuretics (pills to reduce water retention). These eating habits and behaviours become ‘disturbed’ when they become harmful through extreme use. For example, many people (especially girls and women) go on diets and restrict their food intake. This dieting only becomes ‘disturbed’ when dietary rules become so strict that daily food consumption is inadequate for health, either through being insufficient or nutritionally unbalanced. Another example is exercise. Moderate exercise is a healthy behaviour. However, exercise behaviour becomes ‘disturbed’ when it is too frequent, obsessive, driven, or used for extreme weight control so that it interferes with other aspects of a person’s life. If someone is exercising excessively, they will feel upset if they are prevented from exercising and will continue exercising despite injuries or bad weather. They may also prioritise their exercise regimen over having fun or spending time with others. Eating disorders are more commonly found amongst women than men. Approximately 90% of those with an eating disorder are women. However, eating disorders may be under- diagnosed in men because men may be more reluctant to seek treatment for such a disorder. Whilst there are similarities between males and females with eating disorders, there are some differences. Females tend to pursue thinness, while males tend to work towards having a buff body. Men and boys often want to achieve high muscle definition and low body fat. Women and girls also want low body fat, but they tend to want smaller bodies. It has been estimated that approximately 15% of women in Australia will develop an eating disorder at some stage in their life. An eating disorder can have a serious impact on an individual’s quality of life, effecting one’s home, work, personal and social life. People with eating disorders also have a high chance of experiencing physical and medical complications. Thankfully, most patients can make a sustained recovery with treatment. Disordered eating becomes a full-blown eating disorder when it gets bad enough to meet the criteria for a specific diagnosis. These standards are set by expert health professionals.  14 Anorexia Nervosa People with Anorexia Nervosa severely restrict their food intake and become obsessed with food, eating (or not eating) and their weight. A person with Anorexia Nervosa is typically very underweight and has an extremely distorted view of their body (i.e. they see themselves as being overweight when they are in fact seriously underweight). Anorexia Nervosa can develop for males and females at any age or stage of life, although it commonly develops during adolescence. A person who is diagnosed with Anorexia Nervosa will likely display the following symptoms:  A persistent restriction of food intake resulting in an extremely low body weight (sometimes less than 85% of the weight expected for their age and height).  An intense fear of gaining weight or of becoming ‘fat’, despite being underweight.  A disturbed perception of their body weight or shape. A person with Anorexia Nervosa does not see their body in the way that everyone else sees it. Instead, they see a body that is bigger and ‘fatter’ than it really is. They fail to recognise how much weight they have lost and as a result do not think that their very low weight is problematic. Anorexia Nervosa can be broken down into two main sub-types:  Restricting type: A severe restriction of food intake, with no binge eating or purging behaviours. This is the most common type of Anorexia Nervosa.  Binge-eating or purging type: A restriction of food intake but also regular binge eating behaviours (eating large amounts of food in a short amount of time) and purging behaviours (self-induced vomiting or the misuse of laxative or diuretics). Despite weight loss, a person with Anorexia Nervosa may continue to feel overweight and aim to lose more weight, even when considered extremely thin by others. It is important to understand that people with Anorexia Nervosa are not just too vain or have simply taken a diet regime too far. People with this disorder are intensely fearful of gaining weight and do not see their body the way other people see it.  15 Bulimia Nervosa People with Bulimia Nervosa tend to binge eat repeatedly (i.e. eat large amounts of food in a short amount of time) and then attempt to compensate for this behaviour by attempting to control their weight (e.g. self-induced vomiting, fasting, laxatives, overexercising). When a person with Bulimia Nervosa binge eats they feel a loss of control which is followed by feelings of guilt and shame. These feelings lead the person to try to compensate for their behaviour by utilising weight control behaviours. A person who is diagnosed with Bulimia Nervosa will likely display the following symptoms:  Repeated episodes of binge eating involving eating large amounts of food in a relatively short amount of time (e.g. within 2 hours) and experiencing a lack of control over eating during these episodes (e.g. could not stop even if they wanted to).  Repeated attempts to compensate for the binge eating episodes in order to avoid weight gain, behaviours such as self-induced vomiting, fasting, laxatives, overexercising.  Preoccupation with body shape. Focusing too much on their body, shape and weight. A person with Bulimia Nervosa usually experiences weight changes but they do not necessarily lose weight. They may maintain an average weight for their age and height or even be overweight. This can mean that family or health professionals are less likely to detect that something is wrong. Like Anorexia Nervosa, Bulimia Nervosa can be broken down into two main sub-types:  Purging type: A person regularly induces vomiting or misuses laxatives or diuretics to ‘make up’ for the binge eating episodes.  Non-Purging type: A person regularly engages in overexercising or fasting but does not demonstrate purging behaviours. 70% of individuals who undertake treatment for Bulimia Nervosa report significant improvement The symptoms of Anorexia Nervosa and Bulimia Nervosa may appear to be very similar; however, there are two key differences:  The dominant symptom of Anorexia Nervosa is extreme thinness and this is not the same for Bulimia Nervosa.  Cycles of binge eating and compensatory behaviour are dominant symptoms of Bulimia Nervosa, but not of Anorexia Nervosa.