We understand that families sometimes become carers suddenly, are often in shock and overwhelmed with the diagnosis. Most families have very little experience dealing with the challenges of this dementia journey, in particular, the changes of the person with dementia. You do the best you can with the information you have at the time. Please do not feel guilty. We are hoping that by sharing our knowledge and experience, we will add to your tool box as you face more challenges. We urge you to take care of yourself and to please find a support system for yourself as soon as possible.
About memory loss…
Our goal each day is to create magical moments for each of our Residents. Each individual moment adds up to create a good or great day.
Research, along with our own experience at the Devonshire, shows that as dementia progresses, short-term memory ceases to exist. However, long-term memory remains, but it is trapped in the mind.
As carers, we try to help the person living with dementia to access special moments from their long-term memory. This normally involves managing a set of different variables for each person. We already know that each person is unique, that their dementia is different and that the progression of dementia varies from day to day. One day can be very different from the next for each of our Residents. As a result, we face many unknowns each day, while at the same time trying to access magical moments from long term memory.
We use conversation, a favourite hobby or pastime, music and memorabilia, photographs, some kind of sensory stimulation – just about anything we can think of that might trigger the memory of a good, warm, happy moment.
We often refer to these moments as ‘plus 3’ or ‘plus 5’ in our dementia mapping speak. We know that we have reached these ‘plus’ moments when we see the expression of pure joy on a Resident’s face, the twinkle in their eyes, the exclamation of wonder, or amusement, or happiness. It makes our day too! Certainly, this is our raison d’être!
Staff start each Resident’s day with personal assistance. This includes anything that gives the Resident ‘a spark’ to start off their day. Although the Resident may forget the exact ‘plus 3’ or ‘plus 5’ moment detail soon after it happens, they will retain the happy and positive emotional feeling that we refer to as well-being.
Even before a new Resident has moved in, we put on our detective hats and try to learn everything we can about them. We try using different approaches during the first 72 hours of their stay. Many end up not working, as the Resident doesn’t always respond or becomes impatient. This is entirely okay, as it is all part of the process of learning about the unique dementia and personality of the Resident. We will often encourage the Resident to tell us the same story over and over again, if that is the only memory moment that we can access, because due to the way in which dementia progresses, there may be a day in the future that they will no longer be able to relate this magical story to us – this is when we will tell them their story over and over again to capture the same happy feeling.
Q: Family members say ‘How do you cope? I just don’t have that kind of patience!’
It doesn’t matter how often a Resident tells us their story! Sometimes the repetition can become irritating, but we acknowledge how we feel, finding support from our team of staff (Families must develop a support system as soon as possible). We understand how much joy it creates for the Resident to tell their favourite story. We realise that this could be the only real memory that they have left and we continue to listen to their story. We live in their present moment with them. We encourage you to do the same!The loss of short-term memory is a profound loss. We, together with families, have to work hard to create prompts that help to manage the loss for the person and the family. However, this same short-term memory loss is also what gets us through difficult days. When we have managed to find the right response to a repeated question, we can then use the same response time and time again! This memory loss can also present us with new opportunities; for example, if we say something wrong, like asking an open-ended question that flummoxes our Resident, then it will be forgotten soon and we can start over again.
Q: A family member asked me: ‘What should I say when Dad is asking for my deceased Mum?’
We touched on this subject in earlier newsletters and I suggested it could be symbolic that they were trying to look for their unmet need for comfort, reassurance or occupation, and whatever they were feeling needed to be validated. We discussed this question at a recent Management meeting and we all felt that you have to live in their moment. The disease has created a huge hole in Dad’s brain and he thinks that he is living during a different time in his life, that he is of a different age. Many Residents don’t even recognise themselves in the mirror. Many do not seem to recognise their present-day families. If you show them a photo of your younger family, they just may connect the dots. It’s worth trying to figure out what phase in their life they are experiencing and remembering that our role is to create joy, not anguish and heartbreak.
We certainly do not advocate telling a Resident that the loved one they are looking for is dead, because that will recreate the sadness and trauma they felt when the death first happened. That is the kind of thing that we did thirty-one years ago, before I had the privilege of training with Tom Kitwood, the father of the idea of personhood! OUR GOAL IS TO MAKE THE RESIDENT FEEL GOOD AND REASSURE THEM THAT WHOEVER THEY WANT TO BE WITH AND ARE LOOKING FOR, IS PERFECTLY FINE. So, when they ask for their dead husband, and if you know that he used to travel a lot for business, then you answer with that information in mind. ‘You miss him a lot when he is away on business…’ Remember that you are living in their reality, and you are not lying, because you have not said he is just on his way home.
Q: Another Family Member asked: ‘It is very hurtful and sad when Mum does not recognise me’.
Your loved one does know you emotionally, but they just don’t recognise you as you are now, because they are living during a much younger time in their life. They may still recognise your voice, just not your face.
Some wives are afraid of their husbands and this can be the ultimate insult for a spouse. We did struggle with a situation like this a few years ago and it became very complicated. Our Resident did not want anything to do with her husband. She did not recognise his voice at all. We only had a few photographs to show her of a younger phase in their lives to see if there was a pleasant memory that we could pull from her. Unfortunately, we were unsuccessful pulling any memories to connect the dots. Families sometimes stop visiting when their loved one no longer remembers them. If we can piece together what phase of life they are living in, we can be proactive and try to pull a memory from that time. We suggest you arrive with a photograph of yourself and tell your Dad ‘I found a picture of your daughter Georgina, who loves to play field hockey’. Or ‘Hello Margaret (call her by her name, not ‘Mum’), I was hoping you could tell me about this little blonde girl in the photo’. You may light a spark and hear stories that you have never heard before.
Q: A daughter Advocate wondered how long to visit for and how to end her visit without upsetting her Dad because he wants to go home with her.
After investigating and speaking to the staff, we feel you have covered all the bases. You try and plan your departure before an activity, lunch, supper or bedtime, when Dad is going to be preoccupied. When you announce that you are leaving, we suggest that perhaps you do not mention the word ‘home’. It obviously triggers memories and makes him long for another time in his life. Perhaps you could say you have to go to work or somewhere he did not particularly enjoy going – like the dentist! Always keep in mind that our objective is to keep him happy. When it’s almost time to leave, you could alert staff and tell him how much you have enjoyed visiting and that you would like to come again. Sadly, as time is no longer as relevant, your visits do not have to be several hours long.
Q: How do you decide where a Resident will spend the day?
It is usually based on their night report, whether they had enough rest, how they were when being assisted
first thing in the morning. Research and our own experience show that each person has ‘good’ and ‘not-so-good’ days. Some days are more social than others. On other days, large groups, lots of stimulation and noise can be triggers. We try to make sure everyone has social opportunities and stimulation. If your loved one is sneaking in a nap in the lounge or having quiet reflective time in their room when you visit, please do not get concerned and think he or she is being ignored and not socialising or active. Ask the Assistant Manager on duty and they will have a record of what the day has been like.
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 [email protected]