Thoughts on being at home with someone with dementia

By: Eva S. van der Ploeg

Whilst some countries are slowly thinking about opening up society, other countries are still very much in the heart of the storm. It still seems relevant to write about the pandemic, social isolation and social distancing. For this month, I’d like to focus on living at home with someone with dementia during this time. There is so much to say about this, but I’ll try to limit myself to some general thoughts. Everyone’s story is different and by now, many of you will have established new routines.

A most pressing issue seems to be that people with dementia do not remember the new situation. Hence, they may display ‘dangerous’ behaviours, such as walking out, unprotected, forgetting to wash their hands, wear a mask, keep distance. This of course causes significant stress for the family carer, who is trying to keep them safe. The standard line is ‘I keep explaning to him, but he just does not remember (the next day or an hour later)’. And additional consequences may be that the person with dementia becomes aggressive towards the person who prevents them from going out.

I think an important first step to make, is to put yourselves into the shoes of the person with dementia. Imagine that you wake up to a world were everything is different from yesterday. People are wearing masks. The streets look empty. Shops are closed, some may be empty. For some elderly this may have negative associations with times when the world looked the same. And when you are just about to go about your normal business, your partner blocks the door telling you that you cannot go out. You do not understand the news. You do not understand what your partner is telling you about a so-called pandemic that changed the world overnight. You just know that even though the world looks kind of the same (blue skies, singing birds), you have to stay indoors with virtually no visitors. It is not a long stretch to even understand an aggressive response towards the person who’s word you have to take for it that these are the new rules, no exceptions granted.

Now from here, there are two options: finding a way to relay the information or distracting the person with dementia from what’s is going on. Now to share the information, we may need to use a ‘Cognitive Ramp’ (Original Montessori for Dementia – dr Cameron Camp). Instead of repeatedly trying to provide the information in the hope that it will be processed, stored, remembered, use an external ‘brain’ to make the information accesible. With this, I mean a ‘Memory Book’: a simple notebook in which you record together with the person with dementia what is going on. ‘Together’ is key in this sentence. I would suggest the following steps:

  1. first of all ask the person with dementia what they think is going on? In this way you will know what is on their minds. Do they think it is war-time? Do they hold a grudge towards you for limiting their freedom?
  2. Address these concerns one by one.
  3. Find a way, using pictures or animation, to explain what is going on. Make sure that they understand every step. There may be online resources available to assist you, for example there are illustrated books for children that may be helpful, but please target your family member as they like.
  4. Talk through this information. Double check.
  5. Now record this information in the Memory Book using words, images etc. that the person with dementia understands. Even better: use their words. Let them tell the story back at you. If they can write it down themselves, this is great. If not, please let them sign their name at the end of each page that you have written. Tomorrow, they may not remember making this book with you, but seeing their own handwriting and signature is undeniable proof that you have worked on this together.
  6. You can choose to keep a diary together on the consecutive pages. You could record news, events of the day, activities. Anything of interest for the person with dementia. Again when they sign off, it is proof tomorrow of their participation in this project.

The other option is to distract the person from all the things they are not allowed to do. Basically, this means finding meaningful activities to get through the day. I am sure, many of you living with a person with dementia have established some routine during this time. If it works, it is great. If you like some fresh ideas consider this:

-everything is an activity (from preparing, to doing, to cleaning up);

-make the person part of your activities – it will be slower, but if they are engaged (instead of displaying ‘behaviours’) and you still get things done, this is probably a win;

-break their tasks in small steps – so do not ask to do a complicated sequence of steps, but choose one step in a process that will be their job. Let them repeat this step. When completed, they move on to the next step.

For example, think about making a cake together. A first step is: giving all ingredients to the person for them to move together in the kitchen; let them open every package; let them measure all ingredients and pour those in bowls; let them stir or mix; pour the mixture in the oven dish, etc. Be aware of all the small jobs that make a big job. Explain, demonstrate, let them repeat, until understood. The first time, this will be a lengthy, slow process, but if you repeat the activity again and againg giving them the same jobs to do. It will become more routine.

Other jobs may be: setting the table (design templates together of what goes where), cleaning together, drying dishes etc. It is infinite really and they smaller you think, the more you realise there are little jobs everywhere. I know I make it sound easy, whereas it is not always easy. Not at all. I just want to invite you to remain creative and resourceful when you can. And to accept yourself, if today you cannot.

 

Dr. Eva van der Ploeg has a PhD in Public Health from the Erasmus Medical Centre in Rotterdam. She has worked and lived in the U.S.A., the Netherlands and Australia. She is now based in Indonesia. She works internationally as a researcher, consultant and trainer of ‘Original Montessori for Dementia’ hoping to improve the life of people with dementia and those caring for them. She also specialises in Mindfulness and has recently established her company Soulful Brain.

 

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