Changes in Presentation
Daily Presentation
When we consider the presentation of a person living with a dementia, we often have to “play detective” to try and interpret what the person is saying or doing. Supporting a person living with a dementia daily can be emotionally, physically and mentally exhausting, but having a greater understanding of why a person presents the way they do, can help you provide more empathetic and person-centred care.
Physical Needs
As human being we all have physical needs, according to psychologist Abraham Maslow, human beings’ physiological needs for food, water, clothing, shelter, and sleep must be satisfied in order for them to address more complex needs like mental and physical health, relationships, sobriety, long-term housing, and employment.
When supporting a person living with dementia, you could break physical needs down by using the following acronym: PINCHME.
PINCHME
Pain – Is the person in pain? Are they uncomfortable?
Infection – we know infections can changes a persons’ presentation very suddenly, so considering infection is very important. This could be a urine infection, chest infection…
Nutrition – our engagement with food is important for us to survive, but it also impacts on our mood and ability to engage. How often is the individual living with dementia eating? Portions? Overall engagement with food?
Constipation – this is important to consider, particularly as we age. Older people will notice changes in bowel habits and the bodies physical way of digesting what we eat. Constipation is a very physical thing, leading to stress, anxiety, and pain.
Hydration – our cognitive health relies on good hydration. How often we drink, and the types of drinks may alter how we present. We know this is a consideration when consuming alcohol, but also applies to caffeine drinks for example. Giving a person living with dementia a cup of coffee before bed, may result in an unsettled night, waking or increased stimulation.
Medication – a person living with dementia should have their medication reviewed regularly. We know unnecessary medications flood the body with toxins, which can affect us physically. This is important when thinking of sedation medications.
Environment – our environment is a very physical thing. We can have control or sometimes lack of control over it. Therefore, we should fully consider the atmosphere the person living with dementia is in, how engaged they are with their environment and is this dementia inclusive? Is it enabling or disabling?
When caring for a person living with dementia, who you can see is experiencing changes in their daily presentation, physical needs are important. But, we can also consider “hidden needs”.
Psychological Needs
We all have psychological needs, which are not always seen, but we FEEL them. Tom Kitwood illustrates this in his research around “personhood”. What makes us human?
KITWOOD FLOWER HERE
The above flowers, shows us the psychological needs we have as humans. We should also consider this, when trying to interpret a person living with a dementias’ daily presentation.
Comfort – this can have many forms, from clothing, heating, lighting, to those around us and our environment. If we feel comfortable, this shows in how we sit, engage and present, this can also be said if we are uncomfortable.
Identity – we are all unique. If we truly know the person we are supporting, the more we help maintain their identity. What makes us who we are is fundamental in providing person-centred support. What makes us sad, happy, our hobbies etc. Preserving the identity of a person is very important, but this can be difficult.
Occupation – we should think of this as purpose. We all need a purpose don’t we? We like to feel needed, valued and have a meaning in our daily lives. People living with a dementia often tell us, they feel lack of purpose after diagnosis. But we as care partner, can help a person regain these feelings, by providing structure, routine and promote positive risk taking.
Inclusion – we all like to be included. For a person living with a dementia, being included in decisions is very important. This may be deciding on a holiday, what to wear today or aspects of care provision. They should always be included in decisions which will affect them and given the opportunity to express their feelings.
Attachment – we are all attached to something or someone. This may be a dog, a song, a smell, or a place. When this need is met, we feel calm, happy, and valued. But when this need goes unmet, is psychologically damaging for person living with dementia. Each of us longs for continued attached, therefore placing meaningful intervention at the heart of our daily approach to support, results in the person living with a dementia, feeling loved, warm, safe and secure.
Love – this goes without saying, whether we admit it or not, we all need to give and receive love. For people living with dementia, their ability to show signs of affection/love remain, we may have to just prompt it a little. But the importance of touch should never be underestimated. Holding a hand, giving a hug, or just telling the person you love them, immediately meets this need and often we will see a reaction, which can be the gateway to something really special.
Factors to consider:
The time of day
How we are feeling
How our day has gone so far
Whether we are well or unwell
Whether we are stressed or relaxed
Whether we are at home or somewhere else
If we are alone, with close friends and family, or with people we don’t know
How well we understand what is happening, or what we have been told
When we consider the presentation of people living with dementia, we need to take into account not only all of the factors that influence our own presentation but also the way that dementia has affected that person.
Changes in memory may mean that a person with dementia starts to wake up early and attempt to go to work, even though they have been retired for many years. Forgetting can also make it difficult to recognise family members, friends, and their own reflection if the person they see is years older than they think that person should be.
Damage to other areas in the brain might make people more emotional, or change how they respond to particular emotions. Changes in brain structure and function might make people respond in ways that we don’t immediately understand.
Some of these changes might happen. Or they may never happen.
The way that a person with dementia presents is a complex mix of the life they have lived, the things they have learned, their desires and fears, their perception and their thought process in that moment.
It is impossible to know with certainty ahead of time how dementia will, or won’t, affect the way that a person presents. What we have tried to do here is provide a brief overview of common changes in presentation, and provide practical tips for how these changes might be supported. Where possible, we make links to outside sources where you can find extra support if you need it. As always, if you have questions, you can contact us.
Stress, Fear, Anxiety and Depression
There are a lot of reasons that people with dementia may experience stress. They may worry about how others will react to their diagnosis, or may feel uncertain about their future. They may feel stressed when they think about their need for support, and frustrated when they find something more challenging than they used to.
It is important to remember that stress, fear, and anxiety, can make it more difficult for people with dementia to think clearly. This, in turn, can create more confusion, more stress, and more fear. As people without dementia, it is often best to focus on what the person is feeling (like fear) and support them, rather than focusing on what they might be saying to express that fear.
We find the STOP acronym from Oldham Council helpful when supporting someone with dementia who is stressed and distressed. Try to:
STOP
S – See things from the point of view of person with dementia
T – Think about your own thoughts and feelings.
O – Observe and ask what the person is trying to communicate and what is going on
P – Be patient
Once the person with dementia is calm, take a moment to reflect on their presentation. What did the person do? When did it start? What happened before? What helped to calm that person? These can all be important clues in understanding what is happening for the person with dementia. Remember to consider factors that might be less visible, ask yourself if the person might be unwell, if they may be experiencing pain, or if they have an infection.
It is also possible that the person with dementia is responding to something that isn’t there. Many people with dementia experience hallucinations. In her dementia diary talking about being admitted to hospital with pneumonia, Agnes talks about her hallucinations like this:
“It’s awful to be administered to without kindness.[…] Lower and lower I sink into this abyss, in this sea of loneliness, adrift with only my hallucinations for comfort. The hallucinations they’ve become more fierce, more I don’t know the word to call it, frightening. I now begin to pray for death, this is all too much for me.”
Several people with dementia talk about similar experiences with hallucinations in this booklet on sensory challenges in dementia, produced by the Life Changes trust. They say:
“I was looking at photos on the wall … I was frightened because the people in the photos were waving at me…“
Eddie“I think I heard a noise in the house and I am up looking for it and there is nothing there…”
Alan
In these moments it is important to recognise that even if the person with dementia is responding to a hallucination, it is more important to respond kindly than to try and convince them that what they are seeing, smelling, tasting or touching isn’t real. Some people with dementia, particularly those with Dementia with Lewy Bodies, may also experience delusions. Delusions differ from hallucinations in that they are often a set of inaccurate beliefs, where the person might believe there is someone ‘out to get them’, or accuse the spouse of having an affair. Unforgettable gives a good rundown of common delusions and management techniques.
If someone with dementia is anxious for a long period of time, or seems to be depressed, seek advice from a healthcare professional. Many people with dementia experience anxiety or depression, but anxiety and depression are not part of dementia and be treated separately. You can also learn more about responding to changes in presentation from this NHS guide:
Behaviour is usually considered as something we have control and choice over. For people living with a dementia, this isn’t always the case. There are often negative words associated with behaviour “good, bad, inappropriate”. The word presentation can take into account both physical and psychological reasons.
Frustration, Irritation and Aggression
Many people living with dementia will have times when they feel frustrated and irritated. For some people, this may escalate to the point where they express this through verbal or physical aggression. Episodes of aggression can be upsetting and frightening, both for the carer, and for the person with dementia themselves, and so it is important to look for clues that might indicate the cause of the presentation and take steps to address it.
There are a number of reasons that a person with dementia may become frustrated or angry. Just as with periods of anxiety, it is important for the person without dementia to do their best to remain calm when providing support. There are several things to keep in mind when someone becomes frustrated:
Stay calm. Although the person may be expressing their frustration at you, it is not personal. It is a reflection of the changes taking place in their brain, and their ability to manage what is going on around them.
Try to respond to the feelings that the person is communicating, rather than the words they are using.
Provide reassurance- for some people with dementia, an aggressive response may reflect a feeling of fear, rather than one of anger.
If the person is safe, consider giving them space to calm down by moving to another room.
Check in on the person once they have had some time to calm down. Try to interact normally, rather than ‘walking on eggshells’ if you can.
Although it is difficult to predict what might make someone with dementia frustrated, there are a few common triggers that are worth thinking about once the moment has passed.
What happened before the incident? (What was the person doing? What was happening around them? What was about to happen?)
Was anything said before the incident? (When thinking about this question, remember that people with dementia often take longer to process spoken information and instructions, so don’t just think about the words that were spoken immediately before they became frustrated. Many instances of anger and aggression occur when someone is experiencing or expecting personal care, such as assistance showering, or toileting, for example. For others, however, incidents of frustration can be traced back to feeling ‘interrogated’, and becoming frustrated when they cannot answer the questions asked of them)
How was the person feeling? How are they now? (Often people with dementia can become frustrated or angry if they feel as though they have no choice or control in their lives. Consider if anything has changed recently, if the person has had their routine interrupted, if they slept badly the night before. It may also be worth checking whether the person has started or finished any medication recently, and consider if there might be an underlying illness or condition which might be causing them pain).
What has the person been doing? (For some people, being bored can lead to frustration, which may escalate into anger and aggression. Consider if the person has enough opportunity to engage with activities, to access the outdoors, or to exercise)
In some cases, it may be extremely difficult to figure out what causes an episode of frustration. Consider making a small note of the above information after each incident- sometimes looking at them together after a period of time might reveal a pattern that you cannot see in the moment. If the person often becomes frustrated in the same room, for example, consider whether something in that room might be contributing to the behaviour (is there too much stimulation, or is it too dark for them to see clearly etc.).
If you are struggling to manage incidents of frustration, anger, or aggression, it is a good idea to seek support. Consider calling the Admiral Nurse hotline on 0800 888 6678 which is open 9am-9pm on Weekdays and 9am-5pm on Weekends. You may also find it helpful to join the carers forums hosted by the Alzheimer’s Society, or Carers UK. You can also talk directly to your GP about accessing more support.
Uninhibited or ‘Rude’ Presentation
For some people, the effects that dementia has in the brain can lead to the person becoming less ‘inhibited’. This is particularly common in frontotemporal dementia, where damage to the frontal lobes (which manage self control). Someone with damage to this area of the brain might begin to act in ways that make sense to them, but are distressing or embarrassing to others. This is particularly true if the person was more reserved before diagnosis, as this might be mistaken for dementia “winning”.
Uninhibited presentation could include:
Undressing in inappropriate places.
Saying or doing things which are considered rude (such as telling someone they look fat).
Shouting or swearing.
Touching their genitals in public places.
Attempting to touch others inappropriately.
Attempting to touch or speak with strangers.
Urinating in public.
Masturbating in inappropriate places.
It is not difficult to understand why talking about, or managing, uninhibited presentation resulting from dementia might be embarrassing and upsetting - especially for family members and carers. As with the other changes in presentation, however, it is important to remember that these changes are a symptom of dementia rather than anyone’s fault. Nevertheless, there are several factors to consider.
What is the person doing?
If the person with dementia is undressing publicly, consider what this presentation might achieve. Might the person be too hot? Might the clothes they are wearing be uncomfortable (consider the tightness of the waistband, for example).
If the person is attempting to touch others, consider whether they are receiving touch. All humans need some element of human touch, but as we age, our opportunities to touch others become more restricted. For people with dementia, this may be further reduced when they enter residential- or hospital care, where touch is usually associated with meeting a physical need (such as personal care or assistance with eating etc.). If you suspect this might play a role in the presentation, consider adding more opportunities for touch into their routine, such as providing hand massages or manicures, or physical interaction such as hugs, pats on the arm, or hand holding (where appropriate and welcomed by the person themselves).
If the person is presenting in a way that is sexually inappropriate (such as by masturbating in a public space, or attempting to interact with non- consenting others in a sexual way), then remember that developing dementia does not mean that the person loses all desire for sex or intimacy. Many couples continue to have an active sex life after a partner is diagnosed. This can make this change of presentation particularly frustrating, both to the person with dementia and to those around them as:
The person with dementia may see nothing wrong with their presentation.
Those without dementia may be embarrassed or angry when the presentation occurs, or resist talking about it later.
It is important to remember in these moments that the presentation is a symptom of dementia, and not a deliberate attempt to anger, or embarrass, anyone. The way that we build intimate relationships and communicate with our partner is incredibly complicated, and often built up over time. Could their presentation be a misunderstanding? Might they think that the other person is indicating interest or willingness? Considering these questions might make it easier to understand their perspective.
It is also worth asking whether the person’s presentation is actually sexual. For example, it is possible that a person who seems to be touching their genitals through their clothing is not indicating desire, but a need to use the bathroom. Undressing can be caused by discomfort, including tight clothing, itchy seams, or a reaction to washing detergent and so on. If the person is seeking pleasure, consider redirecting them to an appropriate location (the bedroom, for example) rather than attempting to stop the presentation entirely.
If you have further questions about sexual intimacy, or sexual presentation, the Alzheimer’s Society provides a good guide or you might call the National Dementia Helpline on 0300 222 11 22 for advice.
Summary
Although managing changes in presentation can be challenging, it is important to begin by trying to understand why the person with dementia may be presenting in that way. Presentation is always a method of communication, and it always carries some form of meaning- even if that meaning is simple (such as ‘I am content’, or ‘I am tired’).
Because presentation is individual to each person, it is important to begin by getting to know that person as well as you can. Look beyond their illness, to the life that they are living now and have lived before: sometimes presentation that makes no sense ‘now’ makes sense in a previous context (like trying to leave the house at a certain time for work).
Understanding the presentation of people with dementia requires patience, and willingness to persevere over time. Try to be kind to both the person with dementia, and yourself, and do not hesitate to seek support if you need it. Organisations you may find helpful include:
The Dementia Helpline on 0800 888 6678, Alzheimers Scotland on 0808 808 3000, The Carers UK forum or talk to your Dementia Link Worker, GP or other Healthcare Professional.
Resources
Read more about presentation for people with dementia through the DSDC resources. If you live in Scotland you can request the 10 Helpful Hint series for free, thanks to funding.
