2016 HDSA Convention Summary Article
Strategies for Managing Depression in HD Families
Presentation Title: Strategies for Managing Depression
June 3, 2016
Dr. Karen Anderson, MD — Director of the HDSA Center of Excellence at Georgetown Hospital in Washington, D.C. and psychiatrist specializing in neuropsychiatry.
Panelists: Doris, Anne, and Cary — caretakers and members of the HD community who have been affected by depression.
The 2016 Annual Convention of the Huntington’s Disease Society of America (HDSA) took place in Baltimore, Maryland, from June 2–4, 2016. The HDSA Convention is the largest Huntington’s disease (HD) convention in the world and covers a combination of education, advocacy and research topics over the course of three days.
The purpose of this article is to summarize “Strategies for Managing Depression”, a presentation given at the 2016 HDSA Convention. To read more about the relationship between HD and depression, please visit this site.
This article will summarize the main points given in the presentation. It lasted a little over an hour, with 30 minutes allocated to Dr. Anderson’s presentation, 30 minutes for a panel on HD and depression, and 10 minutes for questions.
- Dr. Anderson’s Presentation (30 minutes)
Dr. Karen Anderson practices neuropsychiatry and is the director of the HDSA Center of Excellence at MedStar Georgetown University Hospital. At the start of her talk, Dr. Anderson disclosed that she has worked as a consultant and scientific advisor for Lundbeck and Teva pharmaceutical companies. She also stated that she has acted as a site investigator for several of their clinical trials, including SD809, a drug used for the treatment of chorea and referenced in this presentation. She was also on several scientific advisory panels for both pharmaceutical companies.
Dr. Anderson emphasized that the goal of her talk is to share information, not to give personal medical advice. The information should not be taken as a sole source of medical advice; instead, it should be discussed with one’s care team and clinicians.
Introduction and Symptoms of Depression in HD
In this section of the presentation, Dr. Anderson gave an overview of the relationship between depression and HD.
Causes and prevalence of depression in people with HD
Huntington’s disease affects the brain’s neurochemistry, which can lead to depression. Another factor that contributes to depression in HD patients is the loss of ability to do everyday things, such as driving, working, taking care of children, being independent, and maintaining continence. Losing the ability to do things once central to the identity of someone diagnosed with HD can often trigger depression. The recent loss of a loved one to HD or the anniversary of their death is also a common cause of depression. Additionally, the end of a treatment study can precipitate depression in study participants. For many people, the end of a clinical trial can represent the end of feeling proactive, and it is often unknown whether or not the trial made a difference in the progression of their disease. Centers doing clinical trials can mitigate this by staying in touch with patient participants and making sure participants are thanked and made aware of the impact they have made on HD research.
Many people experience depression and there are many reasons why someone, with or without HD, might experience depression. There are also several treatment options that have proven successful for HD patients who experience varying degrees of depression. As such, one of the last sections in this article focuses on treatment strategies such as psychotherapies, talk therapies, and medications.
In the brain, chemicals involved in reward, pleasure, and mood are affected by the progression of HD pathology. Depression can occur across all stages of HD, and even before someone starts experiencing motor control symptoms. Studies estimate that 20% to 80% of HD patients have depression at some point during their illness.
Depression often occurs in the early stages of HD. It can be concerning when someone in an HD family becomes depressed, since this is often thought to be a first sign of HD. Dr. Anderson advises her patients to seek treatment for depression when they are worried that it might be an early sign of HD. For someone at risk for HD, being treated for depression does not mean they will be diagnosed with HD.
Impact of depression on HD
Depression can have an impact on the progression of HD, which is a compelling reason to seek treatment. In fact, across neurological diseases, people who are depressed are found to have more negative outcomes. HD often progresses faster in people who are depressed. For example, depressed HD patients may experience greater memory decline, an inability to organize thoughts, lower quality of life, and decreased ability to care for oneself.
For people with HD and depression, the depression may worsen as the condition progresses. People can develop depression as they become aware of early symptoms of HD. Dr. Anderson reiterated that depression can worsen as patients start to lose the ability to perform everyday activities, or are told that they need to change how they perform certain activities in response to HD. Dr. Anderson expressed the importance of being aware of depression across all stages of HD.
Symptoms of Depression
Dr. Anderson outlined how she evaluates whether someone has depression. Psychiatrists ask about the following factors:
- Appetite changes
- Low mood, tearfulness
- Poor concentration
- Sleep changes
- Low energy
- Feelings of guilt
- Loss of interest in activities
- Loss of enjoyment
It is important to note that depression does not always manifest itself as sadness. It can appear as irritability, anger, anxiety, rumination, or resentment of caregivers. Depression can also take the form of a personality change.
A lot of people with HD experience sleep problems such as a flipped or erratic sleep schedule. They may also experience sleep fragmentation—this occurs when people sleep for a normal amount of time, but not well. Being fatigued can contribute to a low mood and a less cognitively aware state. For this reason, psychiatrists often look for underlying sleep issues that worsen depression symptoms.
Depression versus Apathy
Families and clinicians may confuse depression with apathy. About 50% of HD patients struggle with apathy or a general lack of motivation. Dr. Anderson expressed that the difference between depression and apathy matters because they require different treatment approaches. Depression can be treated with a combination of structured activity and medication. Apathy can be addressed with exercise and structured activity, but is harder to treat with medication.
It is also important to talk about apathy in order to educate families with HD. When someone has apathy, it’s hard for them to get started with an activity and they are less likely to be interested in doing things. Someone with apathy is not being stubborn. In fact, having a hard time with motivation is often a part of having HD.
Apathy can look like depression and sometimes there can be a combination of the two. Working with a psychiatrist can help tease out whether someone is experiencing depression, apathy, or a mix of both. Dr. Anderson noted that some antidepressants, such as SSRIs, are known to make apathy worse. A reduced dose or tapering off the antidepressant can sometimes help with this.
Non-pharmacological treatment strategies
Depression is very treatable, with or without drugs. Dr. Anderson emphasized that effective non-drug treatments are available. Some people do not respond to or tolerate antidepressants. They may experience side effects or may be unwilling to add another medication to their existing pill regimen. Some people might want to try counseling, either alone or in conjunction with medications.
If someone seems depressed, Dr. Anderson suggests increasing their activities and providing structure to their day. If exercise is a possibility, being physically active has been shown as helpful for mental health in general. Even a bit of walking or seated exercises with hand weights can alleviate depression.
In addition, if someone has lost a hobby due to HD, it can be helpful to re-frame hobbies in ways that the person is able to do. It is useful to consider how they can reclaim that activity. For example, if someone used to enjoy open water fishing, it is possible that they could try to fish while sitting on a platform.
Outdoor time is recommended to help with depression. Daylight exposure helps reset one’s internal clock and improves one’s mood. If it is not possible to be outside, sitting in a sunny room or getting out on the patio can make a difference.
Simply talking to someone supportive can alleviate depression. Supportive talk therapy can be helpful to address depression, isolation, or feelings of dependency, but the individual providing supportive conversation need not be an expert in HD. One type of therapy is called cognitive behavioral therapy. Patients are taught to catch negative feelings, then label and re-evaluate them. This type of therapy is practical, goal-oriented, and occurs over a few months.
To help with irritability, it is important to consider food intake. If a loved one is moody or cranky, it often helps to look at how much they are eating. People with HD need more calories than the average adult. If blood sugar gets too low, mood drops. Someone who is home by themselves should have a friend knock or call to remind them to have a snack and keep their blood sugar stable.
Lastly, Dr. Anderson talked about mindfulness as a way to cope with depression. Mindfulness is the process of paying attention on purpose, and without judgment, to the present moment. The goal is to reduce physical and emotional stress to make day-to-day life better. Being mindful involves being aware of experiences, rather than being consumed by them. Dr. Anderson discussed how mindfulness can help people make more purposeful choices instead of reacting automatically to things they cannot control. For example, at a family Thanksgiving that might be stressful or unpleasant, you can use mindfulness to ask yourself how you will experience the dinner in the best way possible.
Medication treatments for depression
Dr. Anderson talked about the different medication treatments for depression. As a psychiatrist, she considers potential side effects when deciding on a treatment course for each patient. The choice of treatment depends on the side effect profile for a particular individual.
When treating someone’s depression with medication, it’s important to keep in mind that the response to treatment is not always steady and is almost never immediate. Someone may get a bit better but then it may take more time to see further improvement.
Dr. Anderson provided the following list of antidepressants with reference to their side effects:
- Selective serotonin reuptake inhibitors (SSRIs). Options vary from more activating (such as paroxetine, fluoxetine, citalopram) to less sedating (sertraline).
- Vilazodone- SSRI and a 5-HT1A (serotonin) receptor partial agonist. This drug is thought to reduce sexual side effects.
- Serotonin–norepinephrine reuptake inhibitors (SNRIs) such as venlafaxine. This class of drugs works well to treat anxiety, but they have cognitive effects and can cause people to feel tired and lethargic. If someone gets through initial treatment with these, they often do very well. But for someone concerned with how this might affect their thinking, this might not be the best drug to start with.
- This drug is activating and may worsen irritability, anxiety, and insomnia.
- This drug has noradrenergic and serotonergic activity. This drug is sedating and increases appetite. It is a good choice for someone who has trouble sleeping and gaining weight.
- These drugs have cognitive effects. People can feel lethargic or sedated, and they may gain weight.
Dr. Anderson discussed the concept of augmenting, or adding another drug (such as another antidepressant or mood stabilizer) to help the initial antidepressant work better. This can be done if the antidepressant is no longer working as well, or if it works well but not completely. Adding a drug from another class is preferable to increasing the dose of antidepressant, which might have side effects.
With antidepressants, patients take a pill for 4 to 6 weeks and often only start to feel a noticeable improvement about a month or more after starting to take the medication. It is often difficult to take a pill for a month or more before feeling a positive effect. Because the antidepressant has to be taken regularly, it is important to support people and encourage them to keep taking the medication until they feel better. In addition, when people start to feel better, they should keep taking the medication for 9 months or up to a year. If they stop too early, they could have a relapse, meaning the depression could come back and it could be harder to treat the second time. Some patients with a history of severe depression stay on medications more long-term.
Dr. Anderson made an important point about a drug called tetrabenazine (TBZ), used to treat chorea in HD patients. TBZ interferes with dopamine, serotonin, and norepinephrine in the brain. These important chemicals help us to be interested, have a good mood, and be engaged in life. They may appear at lower levels when someone is depressed. If depression or suicidal thinking occurs, TBZ should be reduced as it works by interfering with the very chemicals that naturally prevent depression.
In the HD community, suicide is a very important topic to talk about openly because people with HD are at greater risk of taking their own lives. It is estimated that suicide risk increases 4 to 7 times among HD patients compared to the rate of suicide in the general population. Changes in the brain can make people with HD more impulsive, which is a risk factor for suicide.
Dr. Anderson advised families to employ a strategy called “means reduction”, a way of reducing opportunities for impulsive attempts to commit self-harm. For example, gun owners can keep guns and bullets separated and locked up, or guns can be removed from the home altogether. In addition, family members can manage medications and only dispense daily doses.
For more information on suicidality in the HD community, please visit this site.
The presentation closed with a reiteration of how important it is to talk about depression is in the HD community, since the simple act of talking is a step towards helping people cope with depression.
- Panel with members of the HD community speaking about their experiences with depression (30 minutes)
Next, Dr. Anderson facilitated a panel discussion with Doris, Anne, and Cary, three women who spoke openly about their personal experiences with depression and HD. Dr. Anderson asked a series of questions listed below:
Question 1: What is it like when someone you love is depressed? How can you tell?
According to the panelists, when someone has depression, they often don’t want to get out of bed. If the caretaker is not there to get them out of the house, they may stay in bed all afternoon. They may feel a lack of motivation, energy, and initiative. In addition, they may talk less and appear more withdrawn.
Question 2: Have you tried any of the non-medication treatment strategies I discussed? Which ones have worked well for you?
Having an activity, a structured schedule, or something to look forward to makes a big difference! Walking or mild exercise improves mood.
Question 3: What do you do when someone is at work and can’t be there to provide structured activity?
That is definitely a difficult situation, and it is hard to have a good answer- it depends on the individual circumstance. Overall, finding small ways to make the person feel less stuck should be the priority. For example, engaging with their network of family, friends, and former coworkers could be helpful. Seeing people for coffee or lunch once a month can provide support.
Question 4: What have your experiences with antidepressants been like? How do you know if they are working? What does it look like when someone gets better from depression?
When someone is getting better from depression, they may start to seem more like their old self- for example, they may talk more, seem more energetic, or be more motivated to do activities.
Question 5: Have you found that people get better from depression slowly or not?
Based on the experiences of the panelists, it has been a slow and gradual improvement.
Question 6: Have there been setbacks or ups and downs when someone is getting better from depression?
Certainly with the disease in general, there are ups and downs.
Question 7: In your experience, what’s the difference between being depressed versus being discouraged by having this disease that affects so many different things?
People with Huntington’s disease can feel discouraged and sad, but depression is persistent and chronic. One of the panelists, when discussing her son who has HD, said: “There’s a sadness, but I don’t see the depression in him. He keeps going.” Another panelist added: “Projecting into the future makes everything hard- it’s a waste of energy. I have found that cognitive behavioral therapy helps. Catastrophizing your life does not go anywhere. It’s more practical to try and move your thought to a positive direction. But it took me 10 years to get to this point.”
A third panelist shared a thought brimming with hope: “I’m sixty now, long lived for an HD person. That makes me feel better.”
Resources and further reading
The recording of Dr. Anderson’s presentation: http://hdsa.org/about-hdsa/annual-convention/2016-convention/
Dr. Anderson’s presentation slides: http://hdsa.org/wp-content/uploads/2016/06/HDSA-2016-Anderson-Depression-Strategies-June-3rd.pdf
National 24/7 suicide hotlines: