Tips, strategies and adaptions for hallucinations

The primary goal of supporting a person who is experiencing a hallucination is to keep them safe, to find ways to connect with them, and to de-escalate any distress that is being experienced. 

• Provide any information that is being requested, rather than dismissing it as not relevant. 

• If the hallucination is harmless and not causing anxiety, it is often better to simply accept it and ignore it as far as possible.  

• Connect with the person who is experiencing hallucinations. Listen to and acknowledge what is being said. Affirm what is being described and reassure the person who is experiencing the hallucination that they are being heard. Check to see whether what is being described is in fact true. 

Remember that hallucinations seem very real in the moment. It doesn’t usually work to say that something isn’t there. There are several strategies that might ease the situation. Some may work well at times, and others may be less helpful. But having a number of different things to try, means we can do our best to work out what is most helpful for everyone involved. Before engaging in the various strategies described below, and only if appropriate, it may be worth sensitively bringing someone who is currently trusted into the room to see if they can help diffuse the situation. Suggest closing the eyes and opening them again to see if what they are seeing is still there. If appropriate, have a written reminder message on a whiteboard or piece of paper which says that what is happening is not real and a reminder that it is a symptom of the dementia– a trick the eyes are playing on the brain. Be sensitive in the degree to which these approaches are used and avoid them if they increase distress or confusion.

• Try to ‘normalise’ the situation. Rather than trying to disprove the reality of what is being seen or heard, ask for more details about it. Try to enter into the reality of the person’s experience and engage with them about it. For example, in the scenario above where children can be heard playing outside, we might ask “What are the children saying? Are they shouting? Are they playing a game, do you think?”, rather than responding with a contradictory comment such as “There are no children outside. No-one is making a noise.” 

• Aim to create an environment that feels comfortable and reassuring for everyone concerned. Taking the example of the noise of children playing, you can acknowledge that the sound of children can be disturbing, and suggest that they won’t be playing all night and that they will be going home later. 

• Distraction can work well. Suggest alternative activities that could be enjoyed in the meantime. Moving into a different room or location, making a drink, having something to eat, getting out for a walk, or initiating another activity may help. Activities which engage other senses (for example smell, taste, sound) can be  helpful. Sometimes a sudden noise (for example a doorbell or telephone ringing) can help break the delusion. Some people use a pre-recorded video recording of trusted friends or family members as means of providing a distraction.

• Respond to the feelings that are being expressed in response to the hallucination. For example, responding to the fear or frustration being caused by the hallucination may be a more helpful way to respond than focussing on the hallucination itself. “ I can see that the noise of the children is bothering you. Shall we try moving into another room and see if it is better in there? Or shall we get out for a walk?”

• Try changes to the environment. For example, making sure rooms are well lit, as dim light can make it harder to see, and is well-known to be a trigger for hallucinations.  It also helps to remove clutter. If at all possible, try to avoid patterned carpets and walls.

• Offer reassuring physical contact if appropriate, such as gentle stroking of the arm or an arm around the shoulder. 

• Keep a record of when hallucinations occur. There may be a pattern with triggers you can identify. 

There are some ways that we can adapt our environments to minimise the likelihood of hallucinations: 

• make sure rooms are well lit, with minimal clutter 

• remove objects that might look like people, for example dressing gowns or coats hanging on the back of a door

• remove or cover mirrors, as reflections can sometimes be confusing 

• avoid patterned designs on carpets or walls 

Hallucinations can be distressing for the people who experience them as well as for their families, friends and carers, and may leave them feeling anxious, unsafe, depressed, frustrated and angry. Hallucinations can leave a lasting feeling of being ‘unsettled’ in a person living with dementia even if they cannot remember them.  For both the person with the diagnosis, and their family, friends and carers, the opportunity to speak about the symptoms of dementia can be helpful. Understanding more about the causes of these behaviours can help in trying to find the best way to live alongside them. 

• Make time to look after ourselves. Living with the symptoms of dementia can be uncertain, stressful and exhausting at times. It is important to factor in ways to look after ourselves even when we do not feel as if we have enough time or energy for this. See the RDS website page on adapting emotionally for further information.
• People who have insight into their experiences may benefit from speaking with a mental health professional, ideally one with experience working with neurological disease, to help them process the feelings and symptoms associated with their diagnosis. Counselling services are usually available locally and for a prescribed time, via an NHS referral from your GP. Your GP may also be able to advise you about other charity-funded counselling services available in your area. 
•  Talking therapies. There are lots of different types of talking therapy, but they all involve working with a trained therapist. This may be one-to-one, in a group, online, over the phone. For some problems and conditions, one type of talking therapy may be better than another. Different talking therapies also suit different people.  You can access talking therapies on the NHS. A GP can refer you, or you can refer yourself directly to an NHS psychological therapies service without a referral from a GP. 
• Peer support groups can provide an opportunity for people in similar situations to share wisdom, ideas and suggestions gleaned from their direct experience. These groups provide emotional and practical support for their members. Find out more about peer support groups coordinated by RDS. 

Tips, strategies and adaptions for delusions

Remember that delusions seem very real in the moment. It doesn’t usually work to say that something isn’t true. There are several strategies that might ease the situation. Some may work well at some times, and others may be less helpful. But having a number of different things to try, means we can do our best to work out what is most helpful for everyone involved. Before engaging in the various strategies described below, and if it is appropriate and possible, it is worth sensitively bringing someone who is currently trusted into the room to see if they can help diffuse the situation. If appropriate, have a written reminder message on a whiteboard or piece of paper which says that what is happening is not real and a reminder that it is a symptom of the dementia. Be sensitive in the degree to which this approach is used and avoid it if it increases distress or confusion.

• Where possible, the primary goal of supporting a person living with dementia who is experiencing a delusion is to keep them safe, to find ways to connect with them, and to de-escalate any distress that they are experiencing.
• Talk slowly and calmly to the person who is experiencing a delusion.   
• Provide any information being requested, rather than dismissing it as irrelevant.  
• Connect with the person who is experiencing a delusion. Listen to and acknowledge what is being said. Affirm what is being described and reassure the person experiencing the delusion they are being heard. Encourage people to talk through their thoughts. Try to find ways to make the delusion more manageable for everyone involved and something that can be lived with.
• Check to see whether what is being described is in fact true.  
• Try to determine whether there are identifiable environmental contributors to the delusion. For example, has furniture been re-arranged, or carpets or wallpaper been changed? 
• Ensure there are no other potential causes for the delusion.  Make sure that hearing aids and glasses are to the correct prescription and fit well. Encourage regular health checks and medication reviews. Dehydration, constipation, underlying pain or medical conditions can all contribute to an increase in the experience of delusions.
• Avoid dismissing or contradicting thoughts or beliefs that are not true as this can cause further distress and result in a distrust of the person who is trying to reassure and care. Do not try to disprove the delusion.  
• Remember that delusions are not linked to a person’s memory per se, but rather to a disconnect between the areas of the brain which control information processing and emotional response. So, providing cues based on memory or sensory information will not help, as these factors are not the root of the problem. 
• Try to enter into the reality of the person’s experience.Try to ‘accommodate and normalise’ the situation. For example, rather than trying to disprove the reality of what is being seen or heard, ask for more details about it.  
• Try to calmly offer alternative explanations for what is believed to have happened. Present these as possible coexisting explanations rather than the only correct one. For example:
  • In the case of the wallet that is believed to be stolen: “ Do you think it might be possible that the wallet is somewhere else? Let’s look together in some safe places it might be.” 
  • In the example of the  mistaken identity, try first to orientate the person experiencing the delusion with information, such as: “ I am your daughter and I also live here… shall we have breakfast together?” If this causes increased distress, another approach can be to respond with something along these lines: “I am sorry for the confusion. Do you mind if I join you for breakfast?”
• Avoid adding to the distress already present and look for ways to divert and resolve it. For example, if a person believes that the food being provided is poisoned, ask them about what other food they would prefer and seek out alternative sources for meals. 
• If the delusion is harmless and not causing risk or anxiety, it may be better to simply ignore it.  
• Aim to create an environment which feels comfortable for everyone concerned. Taking the example of the belief that food is being poisoned, suggest a takeaway instead or a trip to the supermarket for an alternative meal which everyone will enjoy. 
• Suggest alternative activities that could be enjoyed in the meantime.   
• Where appropriate, consider what subtle, non-confrontational changes to the environment might help dispel the delusion or give the brain another interpretation to consider. For example, turning on a different light, playing some music, or moving into a different part of the house. 
• Distracting from the delusion may help to resolve it. Moving into a different room or location, making a drink, having something to eat, getting out for a walk or a drive in the car, or initiating another activity may help. Activities which engage other senses (for example smell, taste, sound) can be helpful. Sometimes a sudden noise (for example  a doorbell or telephone ringing) can help break the delusion.
• Respond to the feelings that are being expressed in relation to the delusion. For example, responding to the fear or anxiety being caused by the delusion may be a more helpful way to respond than focusing on the delusion itself.  
• Offer reassuring physical contact if appropriate, such as gentle stroking of the arm.  
• Experiment with background noise. It may be helpful to introduce or turn off, according to its impact.  
• Keep a record of when delusions occur. There may be a pattern with triggers that can be identified and then removed or minimised  
• Try not to take false accusations or beliefs personally. Consider ways in which different realities may have got muddled or overlapped. For example, maybe there is something which did really happen in the past, and which is now being thought of as a current reality.
• Get into the habit of using set places to keep items which get easily lost or mislaid, such as glasses, keys, remote controls etc. Keep spare sets where possible.  

Tip, strategies and adaptations for anxiety

There are several strategies that might ease the situation. Some may work well at some times, and others may be less helpful. But having a number of different things to try means we can do our best to work out what is most helpful for everyone involved. For people living with dementia, their family, friends and carers, the opportunity to speak about their worries and anxieties is especially important. 

• Provide or find a listening ear, and someone who can appreciate and understand the situation. This might be a friend or family member, a nurse or someone in a professional role known to you, or a helpline or information line that offers a listening service. A person does not need to know all the details of the situation to be helpful. RDS facilitates diagnosis and stage specific, monthly online peer support groups for people living with or affected by dementia. Email contact@raredementiasupport.org for more information about these groups.
• There may be some positive actions that can be taken to address some of the factors around which anxieties are focused. For example, making practical changes to the home which simplify the daily living environment to make it easier to find and use things. Try using reading aids, which can help make text easier to see, where there are concerns about visual loss, or identifying someone who can assist with hobbies that are important to a sense of identity and self-esteem. See the RDS website page on adapting practically for further information.
• Try to establish day-to-day routines which help reduce the likelihood of unexpected surprises and provide a sense of security. 
• Make time for stimulating activities that are enjoyable. 
• Try to maintain a healthy lifestyle. Nutritious foods, a reduced alcohol and caffeine intake, getting enough sleep, taking opportunities for exercise, getting outdoors and maintaining hobbies and pleasurable activities as far as possible.
• Try to live ‘in the present’ as far as possible. The need for some plans is inevitable, but with diagnoses of dementia, so much is changeable on a day-to-day basis. Try to avoid making plans that add to obvious causes of anxiety. For example, if mornings are typically more difficult than afternoons, ask for appointments to be in the afternoon. If eating in public causes anxiety, avoid agreeing to mealtime invitations and instead suggest arrangements that do not include eating.
• Manage any other contributors to anxiety that are within control. For example ensure that pain management for any other conditions is well managed.  
• If possible, maintain physical activity and get outdoors daily as this can help reduce anxiety. 
• Ask family members and friends not to call unexpectedly (if this causes increased anxiety ), but to arrange visits in advance. Explain the type of things that cause anxiety to family and friends, so that they are aware and able to adapt accordingly.
• Work out with the person living with the diagnosis of dementia, how long in advance is helpful to be made aware of an appointment or engagement. Too far in advance can lead to over worrying in anticipation, whilst not enough time can feel like an unexpected pressure.
• Allow plenty of time for any appointments or trips that need to be made, to avoid having to rush and add unnecessary stress. 
• Be compassionate and kind to ourselves. Living with the uncertainty that a diagnosis of dementia brings can be very unsettling. Acknowledge the impact of living with this uncertainty and be gentle on ourselves.  
• Consider trying the increasing range of psychological therapies that are now more widely available. See the RDS website page on adapting emotionally for further information.
• If anxiety is causing symptoms which are impacting on daily life in ways which are not manageable, speak to a medical professional for advice about medication to help with anxiety. 

Tips, strategies and adaptations for depression

There are several strategies that might ease the situation. Some may work well at some times, and others may be less helpful. But having a number of different things to try, means we can do our best to work out what is most helpful for everyone involved. For people living with dementia, their family, friends and carers, the opportunity to speak about their depression is especially important. 

• Reach out for support. Email contact@raredementiasupport.org to arrange a call with a member of the RDS Direct Support Team.
• Planning and sticking to a daily routine, scheduling activities around times of the day that work best.
• Scheduling in and planning in advance (with a recurring pattern), enjoyable activities, even if we don’t feel like arranging them at the time.
• Exercising – either indoors or outside, seated or standing. There are lots of online options which are easy to follow along with.
• Avoid packing too much into the day, and environments which are very noisy or busy, if these add stress.
• Actively choosing positive approaches and strategies to help counter negative experiences and reactions. Mindfulness is an increasingly popular and effective technique that many people use to help find balance especially when times are challenging.
• Avoid watching distressing or sad programmes and try to watch or listen to uplifting programmes/podcasts, especially in the evenings. 
• Some people find that listening to calming apps can be helpful. There is usually some free content available but many of these apps come with a charge.
• For example, www.calm.com/ and www.headspace.com/ 
• Speaking about our feelings, fears, losses or anxieties often reduces some of the control they have over us. Expressing our feelings through other mediums such as drawing, painting or poetry can also be a way of sharing them and releasing some of their hold.
• Be alert to trigger points and have strategies in place to respond to these. For example, friends planning holidays or celebrating achievements which are no longer possible for us can be a trigger for additional sadness. Having alternative plans to look forward to or other milestones to celebrate can help ease this. 
• Be aware of and try to avoid unhelpful thinking patterns such as  ‘shoulds’, ‘musts’ and critical, irrational or negative thinking.
• Enable people living with dementia to be involved in decisions, plans, activities and conversation, as far as is possible and comfortable, and ensuring that these are of interest and relevance.