Delusions are fixed, false ideas. They occur commonly in the course of a dementia, sometimes accompanied by sensory hallucinations. This happens as the person’s brain attempts to make sense of the world with diminishing mental resources.
Your behaviour may become incorporated into a delusion. You may be perceived as a thief who keeps taking their possessions and putting them where they cannot find them. Or as a jailer who is restricting them from leaving the house.
Types of delusions can include:
paranoid (suspicious, doubtful or others)
persecution (you are making my life difficult, harming me)
control (a force is making me do things)
reference (the numbers on a licence plate mean the end of the world is coming)
grandiose (I have a special mission in life).
If the person with dementia who you care for has a delusion do not try to argue against it to prove how it is false. This will only reinforce the belief and create distress for them.
Empathise with their feeling-state rather than debate the truth of their belief. Being understood and calmed will be more help to them. For instance, if they feel agitated by the belief you may say, “I am sorry this has upset to so much” or “I am sorry you are so agitated”. You position yourself as a trusted companion at a time when they may be suspicious and wary.
Medication may be a solution to help minimise the distress or the person but it should always be used with specialist medical advice and reviewed regularly.
Social inclusion is a vital need and is often thwarted by ageist exclusion or by people assuming those with dementia do not need any assistance, by forgetting, or by simply not caring. Add dementia to being older and exclusion occurs frequently. If we are included we tend to flourish. We belong, are part of the flow of life, feel connected and alive. If we are excluded we tend to shrivel up isolated even in a crowded room.
When we are younger, able to converse and contribute to social engagement, inclusion is easily sustained often to the point that we don’t even notice it. We just take for granted that we are part of things. However, when we get older and have trouble sustaining conversation or have word loss or memory loss that robs us of the thread of conversation, inclusion is difficult to sustain. We can easily drop into silent watching and then disengagement. We sit silent and are somewhere else inside. Or we just settle into mental neutral. Nothing happening.
Exclusion like this is toxic for our brains. If we mentally freewheel in neutral often enough our brains get the message that its OK to stop working. Inactivity sends a message to our brains that there is no need for it to keep functioning so it stops. Use it or lose it.
Studies of brains at autopsy of people diagnosed with Alzheimer’s dementia have shown that even though their behaviour showed signs of memory loss, and cognitive problems, a good proportion of them did not have sufficient plaques and tangles to justify a diagnosis of Alzheimer’s disease. They had minimised their lives to include little social engagement or physical and intellectual activity. Other study participants whose lives were rich socially and intellectually showed few signs of dementia in their lives even though their brains showed significant AD pathology. What do we make of this? Some dementia appears to be due to chronic inactivity that starts in late middle age as the first signs of aging occur rather than due to brain pathology. Conversely, if we have rich lives with social engagement, inclusion and intellectual stimulation well into old age and do not signal to our brains that it is time to turn off, this appears to have a protective effect on brain function as we age. We have a good chance of maintaining our lives well into the time that any AD pathology is present.
So for people with a diagnosis of dementia, maintain as much brain activity and normal functioning as possible. This means including them in everyday activities as a matter of course. If possible try to avoid adjusting your expectations down to suit their level of activity. Stretch them with some challenge that they can succeed at with effort and scaffolding support. You are the Sherpa helping, guiding and supporting where they need it to scale the mountain.
Who are you? How do you know who you are? Identity is a vital need we all have to know who we are. And it is jeopardized by the forgetfulness of dementia and affirmed or threatened by the way people around those with dementia treat them.
Our identity as persons is formed in the soup of relationships, memories, experiences and things that have meaning for us in our lives. Identity can be associated with our roles in life. These may be occupational roles or personal roles.
What we do or have done for work may tell us who we are. I am a carpenter because I do carpenter things. I carry and use tools. I build things. I measure, saw, hammer, screw and glue. The clothes we wear for work also tell us who we are. A carpenter may wear overalls and a beanie. An accountant may wear a suit and tie to work. A farmer a thick jumper in winter and a hat.
Our identity can provide us with social standing. Because of our identity role others may offer us respect in the way they speak to us, confirming a sense of ourselves. “Hello Andy, you old bugger!” tells me that I am a friend to this person who feels fondly enough toward me to address me in a familiar way. I can now remember that my name is Andy and that I have a friend, likely an old friend. IF someone addresses us as Mr, Mrs or Ms we know they do not know us well or that our relationship with them is more formal than intimate.
If someone uses a nickname or familiar shortened version our name it tells us about their relationship with us. They feel close to us. They know us and have some affection for us. It is worth bearing in mind that not everyone is invited into the social space where it is appropriate to use a nickname. Often it is not appropriate for a younger person to use a nickname for an older person nor to use affectionate terms such as “darling”, “love” or sweetheart”. If you are not sure, wait till you sense the nature of your relationship with them and if possible ask if they would be comfortable with you calling them the name. Check it out. That in itself signals respect.
Attachments are the bonds we form with people, animals, places and things. The earliest bond we form is usually with our mothers. This or a bond with another person who becomes our primary caregiver becomes the template for all other bonds we make in our lives. We can launch into life with a solid sense of ourselves if we make secure bonds of affection that give us an experience of safety and security.
If however, we have early bonds that are not secure, but are unpredictable and chaotic, or harsh and punishing this tends to make us anxious and worried about affection and safety, or perhaps make us want to avoid affection. We tend to make later relationships in the same way.
Making attachments is what we do as mammals. So when dementia comes we continue to form and need relationships with others, with animals, places and things. Familiar people assume a greater importance for providing a feeling of safety and calm. All the better if these people are affectionate and warm (if that is what gives us a feeling of being safe).
It is important to remember that some people may not have ever formed a sense of being safe because of early difficult attachments. So they may react in their dementia from the old patterns, avoiding closeness or becoming anxious and insecure about your affection.
Attachments to animals and objects also remain important for some people. It may be a favourite chair, a worn old pullover, or a photo of their old dog or even her lead.
Thomas had been sitting quietly all afternoon in the lounge. He slept for a good part of it. Watched daytime TV for a time. Without notice he got up from the chair, walked to the laundry where he grasped the dog lead off the hook and said, “Come on then”. Out the back door, and into the park that backed onto his garden. Miriam, Thomas’ wife discovered him gone from the lounge about 20 minutes later. She realised what had happened, pulled on a jacket and boots, and followed him into the park. At first she couldn’t find him but listened and eventually she heard him calling out “Chlo..ee. Chlo..ee”. “There you are” Miriam said. “I can’t find her, the rascal. She went haring off into the bushes after a rabbit and I lost sight of her.” “Never mind love. She’ll come home when she’s ready. She always does”, said Miriam. Chloe was their Jack Russell terrier who had died 15 years ago. Thomas walked her in that park every day of her life and almost every day she went after rabbits, Thomas calling her and walking home with the lead in his hand. And for the last couple of years when the memory took him. Today Miriam walked alongside him and talked gently about Chloe until they were nearly home and talking about supper.
Who and what we are attached to remains important for us well beyond the moment. For some it may be people, for others objects or even places. Former towns or homes we have lived in. People we once knew. What is significant about them is the feeling we have about those places, objects, people, and animals.
It may be that an old relationship assumes a significance for a person with dementia in the present time. This can be very disturbing for a husband or wife to find their spouse talking fondly about a former husband or wife. This has noting to do with their affection for you. It has everything to do with their inability to stay in the present and the brain’s need to find meaningful connection in whatever way it can. If they can’t retain the present moment, old memories may be more easily accessible. So the brain follows the path of least effort and finds the old flame. Disturbing perhaps but it doesn’t mean they don’t love you. They just can’t hold onto you in their minds as easily as they can the long-term memories.
The second of Kitwood’s five fundamental needs is occupation.
Being occupied is important for well-being. We can take this for granted if we are employed and have structure, purpose and routine in our day. Being occupied can provide the satisfaction of making, digging, painting, folding, sorting, washing up, cooking and so much more. You get the idea. If we achieve it is good for our self-esteem, our confidence to try other things or even just to keep doing the things we do every day which reinforces memory. This is why dressing, washing, eating, grooming are important activities to maintain for a person with dementia. As the condition progresses the person may require gradually increased assistance to achieve success but it is crucial that we do not take over. Our role is to provide the scaffolding for them to successfully perform the task themselves.
Occupation is good for memory because it causes us to retrieve past skills from memory and use them again and again and again. This reactivates the old skills and knowledge and increases the chances of these abilities lasting longer in the face of dementia. Use it or lose it.
If we don’t have the structure of someone around us prompting what is going to happen next we can sit around waiting, stuck and bored particularly if the disease affects the motivational area of our brain. A person in this state is at risk of depression, in addition to the physical problems that can develop due to inactivity.
Boredom is a problem for some people with dementia. This usually occurs if they have difficulty starting themselves. If their “starter motor” is not working as it used to do, they may need you to prompt and prod or make suggestions. You need to work out what manner, tone and approach is going to get the best result. Adjust your approach until you get the right combination of words, tone and manner that triggers the person with dementia into action.
Occupation provides an opportunity to reaffirm our sense of ourselves. Who am I? I am a carpenter, a mother, a gardener, a farmer. How do I know this? Because I do the things that carpenters, mothers, gardeners and farmers do.
The first of the five fundamental needs of Kitwood’s model is comfort.
Comfort can be physical and emotional. Physical comfort may come from having enough food, a bed that is right for us, or furniture that fits us. Comfort may come from living in a house that is the right temperature, not too draughty or dark, or too glary.
Emotional comfort may come with affection from people we love, validation of what we are saying or from being able to trust the reliability of people who keep turning up. It may be from the familiarity of doing activities that have always soothed us.
We need a temperature that is pleasant, not too hot, not too cold, and to dress accordingly. However, if we are forgetful and lack awareness of our surroundings we may go outside on a cold rainy day in a t-shirt and shorts. Or we may dress for winter weather when the day is hot and steamy, risking dehydration and sunburn.
Familiarity of our surroundings also gives comfort. We sit in the same chair. We walk the to the shops to buy the same newspaper everyday for years on end. We wear that old pullover or jeans because they are comfortable, familiar. We eat food because it is familiar and satisfying. More than that, to be in familiar comfortable surroundings, clothed in familiar clothes, with familiar people is pleasurable and calming.
And this is where we confront the stresses that dementia can cause. It is difficult to be comfortable when you can’t remember the people, the place, the clothing. In fact, it is more likely to be concerning and irritating. In other words, our need for comfort can be sabotaged by dementia and we can be plunged repeatedly into the discomfort of strangeness.
Personality and temperament may play a role here as we may vary on how much familiarity we need to feel comfortable. Some people thrive on new situations and enjoy wearing different clothes, engaging in novel activities and meeting new people. These people are not going to find the forgetfulness of dementia as discomforting as someone who relies on the familiarity of predictable routine for comfort.
Life experience may also influence how much comfort a person needs and what they utilise to provide that comfort. A former tradesman may want to be outside doing something rather than sitting inside and watching television. Then again, the former tradesman may be relieved to sit inside and be out of the weather watching his favourite football team. That may be just what he needs to do to signal to his brain that he can relax. It just depends.
There are many models of human needs that have been developed over the last century or so. Perhaps the most well-known is Maslow’s Hierarchy of Needs. We won’t go into it here as there is a great deal of information on the internet about this model. You could try this site as one of many examples. Suffice to say it is a useful way to understand what motivates people to act the way they do.
When our needs are met we tend to be calmer, more contented and less anxious, angry and acting out. When our needs are not met we can become irritable, frustrated, angry, sad, depressed, withdrawn, lose confidence, or act out to get our needs met.
A model of needs has been developed with people with dementia in mind. It consists of five basic needs: Comfort, Occupation, Inclusion, Attachment, and Identity. This was developed by Professor Tom Kitwood. If we look at each need we can understand more about the motivations of people with dementia. These are universal needs that everyone experiences and they can help us understand the motivation behind much behaviour we see of people with dementia, and of ourselves. Over the next five posts we will examine each need in turn. This will begin on Monday next. No post tomorrow.
Why do any of us do the things we do? What motivates us? People with dementia are motivated by the same needs and wants as you and me. What we say here about people with dementia is just as true for people without dementia. And this is a fundamental point that is often confused by the way we speak about people with dementia. People with dementia are just people. They have the same needs, wants, desires, motivations as you and me. They don’t become some type of strange alien because they have a diagnosis of dementia. As a person they are continuous with who they were before the diagnosis. They are not mad, or insane, or bonkers. Some of our language has improved over the last few decades but much still needs to be done to encourage people to speak accurately and respectfully when communicating about people with dementia.
What does change in dementia is our ability to process the problems that you and I process automatically and therefore unconsciously (out of awareness) and work out what to do about these problems.
At its most fundamental, behaviour is anything we do or say. And what makes us behave? A stimulus, a trigger, a cause. I smile at you. You smile back. I cry and you feel sad inside. Stimulus-response is a basic way of understanding behaviour. A stimulus or trigger is anything that causes you to do something, or experience something inside and then act.
Triggers for behaviour are external and internal. External triggers are those in the environment around us. The situation you are in may be triggering you to feel hot, cold, calm, annoyed, sad, or frustrated. You walk past a bakery at 7am not having had your breakfast and the smell of freshly baked bread triggers your tummy to rumble. Your brain has registered the aroma and the associations it makes with pleasure and eating trigger your stomach to release gastric juice in readiness for this tasty food. In this way external triggers can cause internal reactions. They can also trigger you to interrupt your early morning walk and turn into the bakery to buy a croissant! The external trigger causes you to act. If you think about it in terms of a sequence it may be clearer:
Smell fresh bread – stomach rumbles – enter bakery and buy croissant
Internal triggers are those we experience inside our bodies and minds. Memory, thoughts, emotions and senses all come together to create our sense of the world and what to do about it. Our brains work out what to do about it extremely quickly and efficiently.
If we think of it in terms of emotional moments in the day we can see how our feelings become involved in explaining our behaviour. Our feelings have physical components and mental or psychological components. For example, when we feel upset/sad we have a thought/image and a physical experience that come together to make the sadness feeling. It may be in response to something we have seen, such as a picture of someone from our life who has died. Memories come and we feel the love we have for them still. A wave of sadness rushes up and we feel tears in our eyes, our chest and throat fill and we reach for the tissues.
We see the picture of our loved one who has died (trigger/stimulus) – remember and feel the love we have for them (internal response, mental and physical) – wave of sadness rises, eyes fill with tears, chest and throat feel full (internal response, mental and physical) – sobbing releases grief (behaviour response) – reach for tissues (behaviour response).
This sequence is mostly internal but is triggered by an external object (picture of loved one) and also involves a box of tissues. Everything else is internal. It cannot be seen or heard by anyone else. Internal experience is private and unknowable by others until we act and reveal what is going on inside ourselves in our behaviour (crying and reaching for tissues). An onlooker may be confused by our upset, not knowing of our love for the person we have seen in the picture. They may provide comfort simply on what they can see without knowing the internal memories and emotions that have been triggered.
Memories as well as emotions may trigger behaviour. As you can see from the above example crying may be triggered by memories of a loved one which in turn trigger feelings. Memories and emotion are often connected. They seem to come at once but studies have shown that there can be a brief moment between them that show that one may cause or trigger the other. Memories can cause emotion. Emotions can cause memories to come. Sadness in response to a photo of a person you loved can trigger past losses and hurts. This is also true for trauma. Current experience can trigger past trauma. Memories, sensory and physical experience can come together to create an overwhelming moment of stress as though the past experience is happening right now.
There will be times when you need to be flexible and quick thinking to move from one approach or position to another in order to bring about success or a goal of being dressed or washed or ready to go shopping.
An example of this is getting dressed. If the person with dementia dresses in a manner inappropriate for the weather or the social situation, i.e., is ready to leave for a family gathering and is dressed in underwear only, adamant that they are ready. You may begin in the Expert position to bring it to the person’s attention, “I think you might need some trousers to go to lunch”. But you cannot remain there if you get a negative response or resistance and wish to avoid upset and be late for lunch. Given how certain he is that he is ready. You may need to move for instance to the Columbo position for a moment. “Oh, I forgot to tell you Aunt Grace is going to be there today. She really likes those black trousers of yours/that jumper of yours. Do you think that would be good to wear? I don’t know. What do you think?” Your goal is for him to be dressed appropriately. However, given the risk for upset if you impose your preferences on him, you may decide that so long as he has trousers, a shirt and a pullover on that will be OK. Which trousers doesn’t really matter. To achieve this you become the Collaborator, who works to achieve the goal of being at the family gathering in a peaceful mood. Or if it gets to be too difficult you may need to move to Companion for a few moments and sit quietly, “It’s all a bit much isn’t it?“