News & events Creating positive mental health outcomes for people with Prader-Willi Syndrome
Many individuals with Prader-Willi syndrome face significant challenges that can impact their quality of life.
Prader-Willi syndrome is a rare genetic condition affecting around 2,000 people in the UK. The condition is caused by a defect of Chromosome 15, which affects the part of the brain managing hormones – including those that control appetite and emotions.
Someone with Prader-Willi syndrome is unable to feel full after eating. Without correct support and management, this can lead to dangerous levels of over-eating.
Behavioural challenges can also arise in individuals with Prader-Willi syndrome. Combined with the other complexities of the condition some people can also develop mental health problems.
What are the links between Prader-Willi syndrome and mental health?
Research conducted by the Foundation for Prader-Willi Research points to an increased risk of mental health problems for people with Prader-Willi syndrome. There are several factors to consider, some link to brain chemistry causing abnormal mood swings, coping strategies, and problem-solving deficits.
When a person is learning about their condition, they sometimes struggle to understand what’s happening under the surface. To them, they are the same as people who don’t have the condition. As they uncover the support required to live with Prader-Willi syndrome, this can be hard to accept and overwhelming to take in.
The food element of the condition is specifically challenging to live with and can be the root cause of mental health difficulties. When someone is unable to feel fulfilled from food, their mind can fixate on food for long periods of time. They will always be thinking about their next meal and, if their support isn’t managed correctly, they may find access to non-edible foods and consume them.
Environment can also play a role in someone with Prader-Willi syndrome developing negative mental health. With so many complex layers to the condition, many individuals require specialist support. When someone moves into care, their environment is critical in ensuring they receive the right support to manage the many aspects of Prader-Willi syndrome.
An environment that isn’t structured to the person’s specific needs can result in trauma, increasing the chance of mental health problems. And easy access to food creates the risk of overeating at dangerous levels. In turn, this can make someone more vulnerable to mental health struggles as they gain weight without fulfilment from their food.
What mental health conditions are common with Prader-Willi syndrome?
There are many mental health conditions that are common among the Prader-Willi syndrome community. Some of these include psychosis, paranoia, anxiety, depression and bipolar disorder.
For most people, these conditions occur during their teenage years and into young adulthood. As people begin to understand and manage their condition, worry and confusion can fuel these struggles. Prader-Willi syndrome is a complex condition to manage, with many needing support from experts in the field.
Despite this, there can still be occasions when negative mental health develops in someone’s later years. A change in structure or environment could be a trigger for this.
When mental health conditions begin, there are several signs to look out for. Despite food being eagerly waited for, some people with Prader-Willi syndrome will have less interest in food, creating additional issues. Sometimes, they’ll consume less when they are experiencing a mental health barrier.
Other signs are presented through behaviour. Agitation and aggression can be linked to mental health, and some people might become more withdrawn, showing less interest to activities they usually enjoy. Consistent changes in sleep patterns and longer duration of sleeping can also indicate the start of mental health conditions.
What mental health support is available for people with Prader-Willi syndrome?
When someone is diagnosed with a mental health condition, there are a number of treatment options available to support their emotional needs and enhance their quality of life. A team of health professionals will likely manage the ongoing conditions if the person is in a care setting.
Talking Therapy is a proven method and can be modified when used to support people with additional needs, like Prader-Willi syndrome. A Therapist or Psychologist will use techniques tailored to the individual. Over time they will understand the person’s background and help them overcome these struggles in a way that prevents the person feeling overwhelmed or uncomfortable. Therapies such as Cognitive Behavioural Therapy (CBT) is just one example of Talking Therapies used to support people with Prader-Willi syndrome who experience mental health difficulties.
For anyone facing mental health challenges, recognising and accepting the need for support can feel intimidating. People with Prader-Willi syndrome navigate a complex condition in daily life. Layered with additional mental health problems, they may feel nervous about engaging with support for mental health too. This can present challenges for their family, friends, and support teams.
How can positive mental health be developed?
There are many ways that positive mental health can be achieved with the right care and support. When supporting someone with Prader-Willi syndrome, it’s important to tailor care to each individual and allow them to do the things that they love.
For anyone with Prader-Willi syndrome, food is key and managing this supports their health and happiness. Ensuring they eat nutrient-rich, calorie-controlled meals can have a huge impact on their mental health. Studies have shown that eating the right foods can send positive signals to the brain, resulting in better moods and wellbeing.
Exercise is also a great tool to for those navigating the condition and mental health struggles. People with Prader-Willi syndrome have low muscle tone and are more susceptible to weight gain. This means they need fewer calories and they can be prone to obesity and other medical conditions such as Type 2 diabetes.
Exercise helps prevent this and improves their physical health and mental wellbeing. Getting outside supports us to create chemicals in our brain that make us happy. So, venturing out does wonders for people with the condition and mental health difficulties. Plus, a structured fitness plan helps them achieve their weight goals.
People with Prader-Willi syndrome also benefit from social interaction and experiences, with a positive impact on their mental health.
Through a person-centred approach, identifying the positive aspects they enjoy and promoting social interaction with people that make them happy is another way to encourage positive and emotional wellbeing.
Building a community with other people that have Prader-Willi syndrome also helps combat mental health issues stemming from loneliness. Often, people with the condition can experience this. Knowing that others are going through the same experiences as them can bring everyone together in a positive and meaningful way.
Goal setting is another way to empower people with motivation and happiness. Working with the individual to plan out some goals and tailoring their care plan to work towards achieving these enables them to focus on positive outcomes – giving them purpose in life and hope for the future.
Find out more
To find out more about our specialist Prader-Willi syndrome support and how we can help you, a client, or a loved one, complete our quick form and a member of the team will get back to you.
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