How to support a loved one through psychosis

Need to know

Susan remembers what it was like, 40 years ago, to be present in the wonder of a darling little baby, her Todd. As a child, she recalls, Todd was talkative, imaginative, sensitive. He loved waking up early and listening to stories, and his favourite stuffed animal was a plush duck, tucked firmly under his arm everywhere he went. As he approached middle school, she recalls, something changed. It began with anger outbursts, bouts of sadness, and feeling like he was somehow ‘different’. Susan (whose name, along with Todd’s, are pseudonyms) said of this time: ‘When he was happy, life was good; when he wasn’t, our lives were miserable.’ Todd started finding solace in cannabis and embraced peer environments very different from his family life. After graduating from high school, he left home.

When he was 26, Susan received a phone call. It was Todd, but he didn’t sound like himself. He said the government was after him and his immigrant friends. He sounded worried and scared despite Susan’s reassurances. Over time, the worries got bigger: he thought that children at the local elementary school were in danger. When he began demanding action from the school principal, his behaviours frightened the school, and law enforcement got involved. This chain of events forced Todd into a psychiatric assessment, which led to a diagnosis of schizophrenia – and started both Todd and Susan on a road to recovery.

Perhaps you’ve experienced something like Susan and Todd’s story. It could be that you have witnessed similar changes with a partner, sibling or best friend. If so, this Guide will provide you with some ideas about how to engage with that person, particularly if you are in a close and caring relationship, and they are experiencing challenges like Todd’s. We will begin with a brief overview of the state in which these challenges arise, commonly referred to as psychosis, and then transition to ways you can support your loved one as they navigate this experience.

What is psychosis?  

Psychosis is a temporary state of being in which a person undergoes a disruption in their experience of commonly shared reality that is markedly different from others in their cultural group. During this state, someone can have unusual experiences such as:

• hearing voices or sounds (eg, an unseen person talking about them), seeing things (eg, shadows or even people), or feeling things (eg, a microphone embedded under their skin) that others may not perceive or think plausible;
• feeling unable to think clearly, or communicating in ways that are hard to follow (such as making up new words or communicating only by repeating what others say);
• behaving in ways that are unusual and are a dramatic shift from their typical actions (eg, not wanting to be anywhere near a television);
• holding beliefs that others would deem implausible, paranoid or bizarre (such as a belief that everyone wearing blue is against them);
• withdrawing from friends or family, or having little energy for everyday activities – often referred to as ‘negative symptoms’; or
• low mood, mood swings, or anxiety.

It can be useful to think of these experiences as lying on a continuum – to some degree, all of us have the potential for such disruptions. However, it can be problematic when the experiences become too intense, unwanted, intrusive, or if they hamper the ability to connect with others or with valued goals, hopes and desired actions. As my colleagues and I tell people: ‘Contrary to popular belief, psychosis and psychotic-like experiences are common, modifiable, understandable, and treatable.’

A state of psychosis can be activated by several causes, including certain medical problems (eg, a head injury, Alzheimer’s disease), drug use (especially certain kinds of drugs like cannabis, methamphetamine or hallucinogens) or, in rare cases, prescribed medication. Psychosis can also accompany mental health conditions, such as bipolar disorder, depression or schizophrenia. Our current understanding is that some people are more vulnerable to experiencing psychosis due to multiple interacting reasons. One’s genetic and biological makeup is part of the equation and may interact with factors such as the effects of poverty and oppression, the experience of certain life events (eg, abuse or trauma, recurring stress), and the availability of social support. Psychosis might even develop in the absence of overtly clear stressors.

Typically, but not always, a psychotic state or break from reality builds over time. A person, or the people around them, may begin noticing slight changes, still within the realm of their typical experience – for example, mood shifts, sleep disturbances or feelings of disorientation. It is possible to intervene and provide support during this ‘at-risk’ or ‘prodromal’ stage, when the person is still generally able to be engaged in their life. Some people continue having these attenuated experiences and may or may not be bothered by them. Others go on to experience an ‘acute’ episode during which they lose touch with consensual reality and consequently experience a crisis or disruption in their lives.

The duration of an acute episode can vary from days to several weeks to months. What happens after an episode varies too, and is affected by factors such as the availability of support, including non-stigmatising treatment (eg, medication, psychological therapy, vocational support, and contact with others who have experienced psychosis), the social environment the person returns to, and behaviours such as ongoing substance use. Some individuals might experience a one-time acute episode and recover completely. Others, especially if they do not get access to care, might have further episodes or lingering aspects of the experience.

What does ‘recovery’ mean in the context of psychosis? 

Recovery simply means a movement toward preferred ways of living one’s life. Based on a conventional medical perspective that you may have encountered before, you might conclude that the goal is to ‘fix’ your loved one. However, a recovery-oriented perspective (which informs this Guide) proposes that someone who is recovering from psychosis can live a meaningful, productive and self-directed life despite experiences such as hearing voices or having unusual beliefs. This means it’s important for you to support the person to engage in steps toward a preferred life, rather than focusing only on symptom-reduction or no longer requiring medication. Re-engagement with one’s hopes, values and dreams might help to reduce intrusive or unwanted experiences, but that is not the only goal from a recovery-oriented perspective.

The movement toward recovery is personal. It differs based on an individual’s context, their support networks and opportunities to make sense of their experiences. It is a process with ups and down, setbacks and gains. But we know from decades of research that the involvement of loved ones improves the chance of recovery for people impacted by psychosis. The support of loved ones can lead to a greater likelihood of valued outcomes such as working, connecting with others, and reduced substance use.

Caring for someone who has experienced psychosis might also put you on your own path to recovery. The changes you have witnessed are likely to have been distressing and led to various emotional responses, including feelings of isolation and despair. The stigma of psychotic conditions and the difficulty many people have finding accessible and affordable care can add to your stress. The steep learning curve involved in supporting a loved one through their struggles can be daunting.

With this reality in mind, the SPIRIT Lab (Supporting Psychosis Innovation through Research, Implementation and Training) at the University of Washington, where I work, partnered with families and individuals like Susan in developing interventions that increase their ability to relate with their loved ones, find mutual support and solidarity, and advocate for change in systems of care. One such programme is called psychosis REACH (Recovery by Enabling Adult Carers at Home), or p-REACH. Our team has found that participation in this programme reduced levels of burnout and anxiety for carers, improved relationships at home, and increased adoption of a recovery orientation.

If someone you love has experienced the disruptions of psychosis, the recommendations that follow – many of which are based on the approaches used in p-REACH – are designed to help you develop a more collaborative and supportive relationship with that person. It is vital to know that their experience of psychosis is not your fault, and that psychosis is responsive to change and interventions. It is a state, and not a permanent condition. We do not advocate for anyone to become their loved one’s therapist, crisis clinician or case manager. But, as one of the family peers I work with said: ‘Families are the frontline workers.’ By virtue of knowing their loved ones best, families are in a prime position to support their loved one’s wellness and recovery.

What to do

Explore your options for professional help

Many people want and need the support of clinical professionals in helping their loved ones, especially when living at home is no longer feasible for the person experiencing psychosis, or when they or their loved ones find their experiences scary or upsetting. It may be particularly beneficial to seek professional support – eg, from a social worker, psychologist or psychiatrist – during an acute episode of psychosis or when there are signs that a person might be moving toward psychosis.

Situations in which psychotic experiences are accompanied by behaviours that compromise the safety of a person, or those around them, can involve temporary inpatient hospitalisation. Many people who care for individuals who’ve experienced psychosis talk about this as a particularly challenging time because of their loved one not wanting to seek help. At times like these, it may be helpful to seek counsel from professionals about available resources in your local community. Susan said that, despite the traumatic experience of Todd’s arrest and subsequent legal system involvement during his psychosis episode, there was a silver lining. The judge referred Todd to a treatment programme that helped him establish a home in his community, and it also checked in with him regularly about his needs.

Many countries now have specialised early intervention or first-episode psychosis teams that people can consult about support for their loved ones. These teams are typically staffed by multiple professionals who focus on education and employment, family education, individual therapy, and medication management. Many teams also include a peer support worker, or a person who has been through similar challenges. In the United States, the Early Assessment and Support Alliance offers a National Early Psychosis Directory that lists early psychosis programmes nationwide. Similarly, the Psychosis-Risk and Early Psychosis Program Network in the US supports a national network of programmes providing services to people who are at risk for, or are experiencing, early psychosis. Organisations like NAMI (National Alliance on Mental Illness) in the US, or Mind in the UK, could also be good places to start finding out what resources are available in your community.

If you are concerned about your loved one’s or your own safety, you may also consider contacting a local emergency room to get connected to psychiatric care. Another option is to call a crisis line, or a peer-run ‘warm line’, and ask for their suggestions.

If you’re not sure whether resources such as these exist where you live, consulting with a primary care doctor for guidance could be a good first step.

Try to understand your loved one’s experience from their perspective

In another case study, Trez Buckland and her son Jonathon came to an understanding through trial and error in their communication. Trez had been telling Jon that the things he heard were ‘not real’ – just voices in his head. Meanwhile, for Jon, his mother’s words made it seem like she thought he was lying. When he finally told her so, Trez took a deep breath and said: ‘OK, so what should I say when I don’t hear those things?’ Jon replied: ‘Just say that’s not your experience.’

This story exemplifies the stance of engaged curiosity and emotional steadiness that we encourage in the p-REACH programme. As Susan said of her own experience with her son, Todd: ‘It’s like approaching my son with wonder instead of with my assumptions and agendas.’ The main goals here are to work in partnership with your loved one and to reduce the amount of distress they are experiencing. The approaches I’ll describe can be used during an acute episode of psychosis (in a situation where you are not concerned about your or your loved one’s safety) to help maintain a sense of calm. Once an acute episode has abated, the approaches can be used to come to a greater understanding of your loved one’s experiences.

One of several useful communication approaches – which our programme combines into the acronym FIRST (more on each letter below) – is Fall back on the relationship. This involves putting the relationship between you and your loved one ahead of the psychosis. You can learn so much by listening to your loved one describe their experience without judgment – no matter how distanced from reality they seem. It is vital for them to feel heard and seen; being told they are ‘crazy’ or ‘imagining things’ does not help, and will likely create rifts in the relationship.

You can respond by normalising or acknowledging the feelings that seem to underlie the experience. To use the example of Todd’s fear, you might say: ‘It sounds like you’re really scared for the kids. I’d be scared too if I thought they were going to be attacked at school.’ Or, if it seems appropriate, you can normalise challenging emotional states by sharing a story about a time when you felt worried or anxious about something, and why. If a loved one is not ready to talk, a step toward connection, no matter how small, can be influential. For instance, Susan knows that Todd loves coffee, so she asked him if she could drop off a latte at his house every day, which has since become a ritual in their relationship.

It is also valuable to Inquire curiously. Make a genuine attempt to enter a loved one’s reality and try to see things from their perspective. Understanding is not the same thing as agreeing – you can maintain your own perspective and still ask serious questions to better understand a loved one’s experience. Susan said she often leads with: ‘Can I ask you a question; you don’t have to answer if you don’t want to.’ She finds that starting this way often leads to a longer dialogue with more details.

Changing communication patterns takes time and patience. You can assess what works and what doesn’t by observing how your loved one responds. Notice: are your questions making them interested, agitated, confused? You probably know your loved one well, so trust your judgment. As you ask questions, remember that not everybody who experiences problematic psychotic states identifies with terms like ‘mental illness’ or ‘dysfunction’, even as they might agree that something is not OK. Take your cue about what language to use from your loved one.

The practice of curiosity can be vital to understanding behaviours that are confusing or seem detrimental. Trez explains that she used curious questions to understand why Jon thought someone was ‘doing things to his brain’. She asked him: ‘What are you noticing? What are you feeling? What are you thinking?’ Based on Jon’s answers, they worked together to determine what would help him feel less distressed.

Once you have begun to understand your loved one’s experiences better, you can Review the information and put it together. This gives them an opportunity to correct any misunderstanding and develop a shared narrative with you of what is going on. For example: ‘When you began thinking that the government had implanted a chip in your brain, you started feeling scared and decided to stay home all week. I’m glad you called me. What else have you done to manage your fear?’

Work with your loved one on responses to difficult experiences

Skill development involves finding responses to a loved one’s distressing experiences that bring down their level of stress and anxiety. One way to start is to ask your loved one what works or, conversely, what doesn’t. For example: ‘Is there anything you do that makes the voices speak softer (or louder)?’ You can then ask your loved one to tell you more about what they do and how they think it works, or simply encourage your loved one to use the strategy when they experience distress. Or you could ask them: ‘What do you think will help?’ and then explore any ideas that arise. For example, one person said her son thought that listening to loud music would help reduce the intensity of the voices he heard. She validated his idea, and they agreed that buying headphones would be a good first step. (There are a variety of other potential coping strategies for responding to voices, such as exercising or practising mindfulness.)

You could also discuss the causes or effects of distressing experiences. For example, someone with psychosis might have disrupted sleep, which could be due to a range of reasons (eg, medication effects, hearing voices, worry from paranoid beliefs, lack of structure, drinking too much caffeine, etc), and sleep deprivation might intensify their distressing experiences. In this case, you might work with them to understand the barriers to sleep and come up with a plan to address these.

If your loved one has a distressing experience related to a seemingly paranoid belief, you could ask them what alternative explanations might exist for their experience. For example, if they say they are convinced that their quickened heart rate means that someone has poisoned them, you might ask your loved one if there were other times when they’ve experienced a similar rise in heart rate. You can also normalise the experience, and share that your heart rate tends to go up when you’re feeling anxious – perhaps that happens to them as well? If they are amenable, you can agree to work together on calming down, using strategies like deep breathing to slow their heart rate. Or perhaps you can suggest that your loved one could consult a doctor.

Finally, you and your loved one can Try out the skill and get feedback – have a go at using the skills that you’ve collaboratively decided on, and then assess what worked and what didn’t. You can elicit feedback through curious questions about why the person thinks something worked, and their understanding of what needs to be done differently. This step is important in increasing a feeling of agency and empowerment, and garners evidence for the sense that the experience of psychosis is malleable.

Encourage connectedness

Experiences of psychosis are often accompanied by isolation. This can be a consequence of stigma fuelled by stereotypes and misconceptions about mental illness, the internalisation of negative beliefs, and doom-and-gloom messages about outcomes for people who have experienced psychosis. Maintaining relationships with others, and being part of one’s community – in short, connectedness – is an important part of recovery. Connectedness is one of five processes in recovery highlighted by the psychologist Mary Leamy and her colleagues at King’s College London. (Other processes, which we’ll discuss further, include hope and optimism, identity, meaning, and empowerment.)

You can support a loved one’s reintegration into a community by helping them figure out where their abilities and talents might be best applied or supporting them in pursuing goals that were disrupted by the psychotic experience. For instance, one family recognised that painting was therapeutic for their loved one, and encouraged him by buying art supplies to nurture his talent as a first step. Another supported their loved one to go back to college, and worked with the disability services office to advocate for accommodations.

You can also promote connectedness by seeking to strengthen your personal relationship with your loved one experiencing psychosis. In addition to using the communication strategies described earlier, you might strengthen this relationship by talking about shared family memories or working together on shared interests. For example, Susan tapped into a family interest in plants by starting a fruit and vegetable garden at Todd’s home as a shared project. Now they regularly talk about (and eat, together) their favourite green beans and apples.

Interpersonal connections can help to build hope. Hope, in this context, includes a sense that one’s aspirations are still within reach, and it is characterised by a motivation to change and a belief that recovery is possible. Connections with people who have navigated similar challenges after experiencing psychosis can be an especially vital source of hope. You might encourage your loved one to learn about other people’s recovery stories and to connect with those who have had similar experiences through forums such as the Hearing Voices Network.

Help them to understand themselves more positively

Many people experience a sense of disorientation after an acute episode of psychosis, especially if it involved psychiatric hospitalisation, disruption in relationships or life plans, or starting medications that have side-effects. Recovery can involve, in part, rebuilding a sense of identity, of ‘Who am I?’ You can support this process by affirming for your loved one that their psychotic episode does not have to become the central, defining feature of their identity. This may sound obvious, but it is quite easy for the person who has experienced psychosis and/or those close to them to overfocus on the ‘patient’ identity; this is often fuelled by fear of another episode.

Meaning-making is an integral component of psychological and social approaches to understanding psychosis. From your perspective, this can involve assisting your loved one in understanding ‘What happened/is happening to me?’ and ‘How do I want to respond to my experiences?’ (as opposed to ‘What is wrong with me?’). Enquiring curiously about their experience and about what seems to help them, as recommended above, can be used to help them answer these questions, at least in part. Some people also find a sense of meaning by turning to spirituality or creative outlets like visual art, music, dance or poetry. Others may find it in social roles and goals that bring them closer to a sense of purpose.

Finally, when people experience a sense of empowerment, of agency and control over their lives – which can be challenged by the unpredictability of a psychotic episode, stigma, and practices involved in psychiatric hospitalisations – they are more likely to take personal responsibility and focus on their strengths and abilities. You might play a pivotal role in scaffolding this recovery process by creating ways for your loved one to exercise self-determination and choice. Remember that no step is too small – Susan said she started by asking Todd: ‘What would you like to do today?’

Take care of yourself and seek a community of concern

Psychosis can take up a lot of space in families’ lives. Through it all, it is understandable that many people who care for those with psychosis give up routines and cherished activities, lose hope, and feel distressed themselves. What you do to feel balanced, to regulate, reset and reconnect with hope can affect your ability to have a mutually satisfying relationship with your loved one.

The so-called ‘stress bucket’ exercise visualises sources of stress in your life as rain clouds that fill your metaphorical bucket, causing you to feel overwhelmed. Think about what factors, or ‘rain clouds’, might be contributing to your stress, whether they are related or unrelated to your loved one. Then consider:

• What effects do they have on how you think about yourself as someone who cares for your loved one – and how you think about your other relationships?
• When the clouds take over the sky, what does it prevent you from noticing or doing? If the skies continued to be clouded over, where might you be headed?
• What might help to clear the skies, even a little? Who might be able to support you?
• What have you done in the past when the skies got cloudy? Would you be able to do some of those things now?

The family members I work with acknowledge that there are times when coping strategies or skills meet their limit. At these times, what has helped the most is the availability of ‘communities of concern’ – the support and solidarity they get from connecting with the loved ones of other people who have experienced psychosis. Such mutual aid spaces, which might include in-person or virtual support groups, can be found through searching for local support groups online or through carer support organisations like NAMI or Mind. In these spaces, participants can compare notes on how to navigate systems of care and manage challenging situations. Importantly, they also feel heard and understood: concerns are normalised, mutual support is established, and they can speak freely about their experiences without fear of blame or judgment.

Links & books

The book Back to Life, Back to Normality, Volume 2: CBT Informed Recovery for Families with Relatives with Schizophrenia and Other Psychoses (2018), edited by Douglas Turkington and Helen Spencer, is an accessible and hope-focused guide to understanding psychosis. It includes stories of people who have navigated psychosis and practical ideas for supporting a loved one’s recovery.

The books from the ‘Overcoming’ series – including Overcoming Distressing Voices (2nd ed, 2018) by Mark Hayward, Clara Strauss and David Kingdon, and Overcoming Paranoid and Suspicious Thoughts (2nd ed, 2021) by Daniel Freeman, Jason Freeman and Philippa Garety – apply concepts from cognitive behavioural therapy (CBT) to help people make their way through these experiences. These books can also help the loved ones of people who hear distressing voices or have paranoid thoughts get a sense of what those individuals may be contending with.

The book Young People Hearing Voices: What You Need to Know and What You Can Do (2013) by Sandra Escher and Marius Romme is a great resource for both children who hear voices and adults who want to better respond to them. The authors were founders of the Hearing Voices Movement, which promotes hopeful and rights-based approaches to understanding psychosis. Two related resources are Intervoice and the Hearing Voices Network.

Memoirs that capture the experience of psychosis and the journey through treatment and recovery include the book The Center Cannot Hold (2007) by Elyn Saks and the book Psychotic Mum (2019) by Brenda Froyen. You can also watch and hear the psychologist Eleanor Longden’s TED talk ‘The Voices in My Head’ (2013), Saks’s own talk, ‘A Tale of Mental Illness – From the Inside’ (2012), and Froyen’s perspective in a webinar (2020) on what hurts and what helps in treatment.

The powerful short video ‘Compassion for Voices: A Tale of Courage and Hope’ (2015) outlines a hopeful approach to understanding voice-hearing.

The website Understanding Voices – produced by Hearing the Voice in close collaboration with voice-hearers, their families and allies, and mental health professionals – makes it easier for people to find information about different approaches to voice-hearing and ways of supporting those who are struggling with the voices they hear.

The booklet Understanding Psychosis: A Guide for Young People and Their Supporters (2022), edited by Anne Cooke and endorsed by the British Psychological Society, explains why some people experience psychosis, and provides tips on what could help.

If your loved one has experienced psychosis and is interested in talking about it with others, you might share and discuss with them another Psyche Guide by Carla Kundert and Patrick Corrigan, ‘How to Talk About Your Mental Illness’ (2022).