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Our Residents have been our best teachers...

The views presented in this newsletter article are based on our own experiences, observations, dementia mapping and clinical research from around the world. They are all opinions of the author, based on over 30 years of experience working with people living with dementia. Annar Mangalji has been awarded an Honorary Doctorate degree from the University of West London for her work in dementia.

 

Understanding changes in personality and behaviours.

It is really important for families and friends to remember that the person you love and miss is still there; unfortunately because of the disease of dementia their brain is dying and causing all sorts of havoc for them. You see changes in behaviour that are unrecognisable and may be alarming. The daughter of one of our Resident’s (Betty) was shocked to hear her Mum swear; she had no idea her Mum even knew those words! It is these changes in behaviour that people refer to as changes in personality that are befuddling, that wear you down and cause so much angst.

Behaviours have meaning and they happen for a reason. We know today from our Residents that their behaviours are attempts to express an unmet need. This could stem from anything including pain, hunger, thirst, wanting to go to the toilet, feeling unsafe or insecure, not knowing where they are or who they are, being too hot, too cold, in a noisy environment… the list is long.

Why behaviours occur

Before we can resolve the behaviours, we first have to understand why they occur. Dementia damages the brain cells and as more and more parts of the brain are harmed, cognitive function is reduced. The progression of dementia is different depending on the person and type of dementia. As it progresses, some parts of the brain required for communication, memory, coordination and focus are likely to become damaged. This could affect hearing or speaking, processing of information, memory, the person’s ability to perform activities of daily living, emotions and could cause loss of memory, visio-spatial problems, discomfort from light or noise or temperature, inability to recognise common objects around them and so on.

The person living with dementia will no longer be able to communicate or do complex tasks that need precision and coordination. When they try to perform such tasks, they may have an accident or become frustrated. Simple every day living tasks such as bathing or going to the toilet require presence of mind to coordinate various parts of the body and the brain. If the dementia-causing disease has affected the person’s ability to perform some of the steps of a common daily task, the person will not be able to carry out that task alone and will need help. This in itself can cause distress and trauma. Imagine not knowing where you are, what day it is or what time it is, in addition to not recognising people. Imagine struggling to find the correct word to express yourself; imagine wondering what has happened to make everything seem so terribly wrong, but being too ashamed to admit the problems you are facing or not being able to ask for help; imagine not understanding that these problems are because of a disease and are not your fault. This in itself can cause distress and trauma. As the person is not able to express this to you, he or she may behave in a manner that alarms you. The personality of the person will appear to have changed but in actual fact the person you know and love is still there.

The reduction of person’s abilities is often gradual, so families need to monitor the physical surroundings of the person diagnosed with dementia, to check that they continue to be suitable, safe and secure. Very often, the person will remain in the same home for as long as is possible.

Asking questions

Asking questions is sometimes not a very good idea if the person with dementia is confused and has ailing cognitive function. A simple question like ‘would you like a cup of tea?’ may set them off. They may become stressed trying to think or remember what tea is or if they like tea. Instead it is better to make a statement such as ‘Lets have a cup of tea.’ If they don’t want the tea, they will not have it.

The simple things that you and I take for granted will become huge things for a person living with dementia. For example going to the bathroom. If the person has had a few accidents, do not automatically assume they have lost their ability to control their functions. If they know they have to go but cannot get to a toilet, they may break out in a behaviour. You have to be patient and break down their behaviour to understand what it is that they are trying to express. Then you can find a solution. Here are some pointers to consider:

Does the person with dementia feel the urge to go to the toilet? If not, regular reminders to ‘spend a penny’ may be required.

  • Is he or she able to communicate this need?
  • Is the person able to get up and coordinate going to the toilet?
  • If mobile, can the person find the toilet?
  • Does he or she recognise the toilet?
  • Is he or she aware of how to use the toilet?
  • Are his or her clothes appropriate and easy for the person to take off and put on again?

Sometimes, family and friends who are around the person do not realise that the way they communicate will be different. The behaviour becomes the communication and families have to put on a detective hat to figure out the meaning behind it. 

When a person with dementia has behaviours that are difficult to understand, families need to create a checklist process of elimination. For example: 

1) What is Mum or Dad trying to tell me? 
2) Is she or he in pain?

The person living with dementia may not be able to say that they are unwell or are in pain. So their needs remain unfulfilled. This may frustrate, distress, or anger them, even if they don’t know how to express it. If they are ill, their illness will affect their ability to do things, we have to try and understand why the person with dementia is behaving differently on each day

We also need to be aware of several markers when we find a Resident is behaving differently to their normal way of being. We first check and make sure that they are not constipated or dehydrated, or that they don’t have a Urinary Tract infection. All of these can cause confusion and behaviours.

Repetitive questions and behaviours

Families often tell us that they find the repetition of questions along with repetitive behaviours very hard. It wears down their patience and is exhausting. Persons living with dementia may repeatedly say something or do the same action over and over again. They may forget what they said, they may even forget they have eaten breakfast or taken their medication. The latter can become a risk. Families might get annoyed or distressed if they don’t understand why the person is behaving in this manner.

Why do people with dementia repeat themselves? We think it’s because they are searching for something. Once you figure out what it is that they are trying to communicate or ask for and you are able to find a way to satisfy them, you will find you can use the repetitive behaviour as an opportunity to engage and to respond to them. Their dementia will make it seem like a brand new conversation to them every time.

One way to respond to repetitive behaviour is to look for the feeling that might be behind a question asked or a particular kind of behaviour. Once you understand the feeling, then you can validate it. One of our Residents always used to ask for her dead husband. We checked to see if she missed him and were able to ascertain that it would not be helpful to tell her he had passed away each time she asked about him - as this would traumatise her all over again, every time. Instead, we were able to talk to her about the things she missed about him. Her reality was that he was still alive. This raises a huge ethical dilemma – whether to encourage the white lie or not. At the Devonshire, our rule of thumb is to try and distract from and not embellish the white lie. We also look at whether our Resident is anxious or agitated, as this would require a different kind of response.

Repeated actions like packing/unpacking a suitcase or pacing back and forth in a room can be very tiring for families. It is easy to get annoyed or distressed. At the Devonshire, we don’t feel that there is any harm in it, as long as the person with dementia is safe - in the end, what does it really matter if they pack and unpack?

We know some Residents like to explore and are happiest walking around and tidying up. We even provide finger foods at mealtimes so that they can continue their adventures if they wish. Our Assistant Managers regularly do dementia mapping (an observational framework developed by the late Tom Kitwood and the University of Bradford) and we were so delighted to learn how much positive interaction and socialisation they experience. They are content as they are free to explore the whole house (unlike in a lot of other homes, where they are restricted to a particular floor or wing). They gather things, borrow things, often items that belong to others and put them in their rooms. Many years ago we realised that trying to present the ‘house and garden look’ - one of cultivated and controlled order, was taking over our raison d’etre, which is actually simply to have our Residents experience more joy and well being in a safe and comfortable environment. So we ensured that the needs of Residents who require privacy and do not wish to share are respected while the explorers enjoy their daily adventures too. This way everyone is happy!

We are all still learning. Each day is different and each day we put on our detective hats and look at our Residents’ unique lives, their likes and dislikes and try to figure out what they are really trying to tell us with their behaviour.