Families often ask us questions as they are often trying to understand a loved one’s behaviour. We have included some of the questions we have received.
Q: On some days Dad behaves normally and on other days he does not. Some days he doesn’t even know who I am. It’s very upsetting.
A: We can only surmise, in the most simplistic way, that on the good days the connection and signals are getting through to the parts of the brain (thalamus, motor cortex, hippocampus) that processes and communicates information. It is just like a light bulb that works when you switch the light on; and on the ‘not so good’ days the connection is faulty and the light bulb is flickering or not turning on at all. It’s those days when there is not even a flicker of a connection that the person with dementia is most vulnerable.
Q: Some days I don’t think Mum even knows who I am. It’s very upsetting.
A: It is upsetting, but we do believe that your Mum knows you, knows you are someone special but is sadly unable to identify exactly who because she is unable to process the information in her emotional library. For the sake of simplicity we can say that each person has two types of memory: a factual memory that is the logical part of a brain that processes information and an emotional memory that expresses and remembers the feelings.
If you visualise a bookcase of photo albums, this bookcase represents the unique life of each person. Each photo album represents the different and unique events of our lives such as childhood, school life, our relationships – all the milestones one experiences in life. Each has lots of photos and each photo has a factual and emotional memory attached to it. These albums of life events are stored in order say from right to left, with the earliest memories on the bottom shelf and the most recent on the top shelves. Questions, conversations and thinking all access these libraries.
With the onset of dementia, the shelves in the bookcase start to wobble; progression of dementia creates more wobble and as this continues, some of the new photo albums from the top shelves fall off. This becomes the forgetfulness and disorientation, which then continues with the progression of dementia. More shelves wobble, more photo albums fall, some of the photos fall out of the albums and are scattered all over the place and completely out of order. The photo albums at the bottom of the bookcase containing early memories stay intact, just as in the case of dementia, long term memory often remains intact for longer. However, factual memory involving logical thinking and processing of information is not organised in chronological order, so the factual memory stored in the hippocampus will not function properly. Emotional memory is stored in categories, which explains the confusion and mixing up of people. Your Mum or Dad knows you, knows you are someone special but is unable to identify exactly who you are because she or he is unable to process their emotional library. This is why we think it is best to try and connect with people living with dementia on an emotional level. Our interventions use music, singing and olfactory stimulation of senses, we try to listen with our hearts and interpret behaviour as the feeling.
Q: Why is bath time and assistance with personal care often difficult?
A: We experience this too. It is not that the person is trying to be difficult or resistant deliberately. They are behaving in a normal manner. The person with dementia may not be able to understand what is being said, they are disoriented and don’t know where they are – it is a bit like waking up in a strange bed, in a foreign country with strangers, who are speaking some foreign language. Now imagine what you would do if one of these strangers started reaching for your clothes and tried to undress you! It is not surprising that you would try to protect yourself and hit out at them. Our programmed fight or flight response is coming through! Unfortunately, the person with dementia is then labelled violent and aggressive, when all they are really doing is protecting themselves, which is the most natural thing to do. We all do it - when feeling powerless, we fight back. We don’t have any magical solutions for dealing with this reaction other than using a gentle approach, a soothing tone of voice, calming the person, reassuring them and then trying again a little later.
We often find bath time or assistance with personal care can be traumatic for the person with dementia if they are disoriented and do not want strangers undressing them. (Strangers because the recognition may not be there that particular day). We are still experimenting with different props for bath time. Bird sounds worked for several Residents, taped recordings from their family for others, opera music and singing have all worked on various occasions as well. We usually try to give the person with dementia a face towel to hold onto. We are always researching to see what others are discovering and what best practice looks like.
Q: Why is it that Mum is so calm and cooperative on some days and really awful to be around on other days?
A: If you can see the person with dementia as someone who has a disability, a progressive disability where some days are better than others, it becomes easier to accept the variations in behaviour from one day to the next.
Q: Why is Mum always searching for her father?
A: We believe that our Residents’ behaviours are attempts to express an unmet need as well as a form of communication. It is therefore really important to be able to take a step back and look at what the person is doing. What feelings are they trying to communicate? You can only do this authentically if you know the person fairly well and also know about the relationships they had with the person they are trying to find. For example if someone with dementia is searching for their mum, their dad, their children or the significant other, we look at the feeling behind what they are expressing. We interpret the searching as a symbolic seeking for love, comfort, and security and we try to respond to that feeling by filling the need for comfort and reassurance. When some of our Residents use role words such as working or cleaning, doing the washing - we respond by offering something for them to do, as we all have a need to feel useful, we all need meaningful occupation.
Q: Families often tell us that they stop taking their Relative out into the community for lunch on special occasions or for errands because it is too embarrassing.
A: The person living with dementia may become “disinhibited” and not behave in socially correct ways. Parts of the brain are dying and a consequence could be poor behaviour regulation, that can often lead to embarrassing situations.
Friends and family around the person with dementia may think the person is now a “bad character” or is inconsiderate and insensitive. For example, the person may make rude remarks (even sexual comments), shout or abuse; or the person may laugh when others are crying; or lose interest in everything and not respond to the emotions of others. Examples of disinhibition include publicly stroking or exposing genitals, making lewd gestures, lifting up a petticoat or nightgown and so on. These are all part of the process of the brain dying and are not deliberate behaviours. It is all extremely embarrassing and we usually try and divert the conversation and distract the Resident into another activity. Sometimes we have to make sure their carer is of the same sex, so that there is absolutely no provocation of any sort. This is also one of the reasons we have brought social life and the community into the Devonshire, including the Devonshire Arms Pub, the Lyons Tea Room, the Street Garden, the Cinema and Market Stall, Barbers Shop and Hairdressing Salon.
The views presented in this article are based on our own experience, observations, dementia mapping and clinical research from around the world. They are the opinions of the author, based on over 31 years of experience working with people living with dementia. Annar Neallani Mangalji has been awarded an Honorary Doctorate degree from the University of West London for her work in dementia.
We hope you have found this article helpful. if you have any questions please send them through to us on firstname.lastname@example.org