A guide and ideas to positively support those living with dementia, developed by the Optalis Dementia Care Advisors team.
The Dementia Care Advisors (DCA) team is a specialist advice and information service supporting people living with dementia and their families and carers, in the Windsor and Maidenhead area. The team provide support, advice, education, information and therapy to help adults live well with dementia. This booklet explores different experiences and actions people who are living with dementia may take during their dementia journey and provides insight and ideas for those supporting them.
Two key words
There are two words to remember that will help you understand and communicate with a person with dementia, they are SAFE and RESPECTED. We all need to feel safe with the people we are with and the environment we are in, and feel that we are being respected and listened to. Even if it is hard to follow what they are saying, it will help that you are listening. This is particularly important for someone with dementia who is no longer able to rely on their brain to give them the correct information. It can be very scary to live with dementia and no longer trust that brain. Think of the moment you lose your car in a car park where you are convinced you left it, or the moment you wake up in a hotel and are briefly disorientated until you realise where you are. That feeling of slight panic and confusion which only lasts a moment is how it feels most of the time with dementia.
Being a carer
Being a carer can feel impossible sometimes, it seems that you need to have endless patience, are endlessly tired and get no reward. In can be hard not to argue back, particularly when it feels ‘personal’, but there is no point in arguing as dementia will be the only winner in any argument. Try and picture a giant letter ‘D’ between you which gets in the way of all communication. Every person’s journey is individual, one person’s experience may be totally different to another, well meaning friends may give you all sorts of advice, but you know your loved one best so trust your own judgement. Carers sometimes find that they are dealing with difficult behaviours that other family members or visitors don’t seem to encounter. This is because they trust you and know that you won’t abandon them even if they are not on their best behaviour, and they can show you they are upset or irritable. So in a way you should take this as a compliment as it means you are the most important person to them. You are doing a great job, give yourself a pat on the back even if nobody else does. Above all, make sure you get support and help wherever and whenever you can, dementia is a difficult journey for everyone involved and almost impossible to do alone.
Tips: coping with unusual behaviour
- Try to remember that the person you are caring for is not being deliberately difficult, their sense of reality may be very different to yours but very real to them. Dementia can affect a person’s ability to use logic and reason so things that may seem obvious to you might appear to be very different for the person with dementia.
- Ask yourself whether the behaviour is really a problem. If the behaviour is linked to a particular activity such as washing or dressing, ask yourself if this task really needs to be done right now or if you could leave it for a while until the person has calmed down.
- Try to put yourself in the person’s situation. Imagine how they might be feeling and what they might be trying to express.
- Offer as much reassurance as you can.
- Remember that all behaviour is a means of communication. If you can establish what the person is trying to communicate, you will resolve the problem much more quickly.
- Distract the person with calming activities such as a hand massage, stroking a pet, a drive in the country or by playing their favourite music.
- Try to make sure that you have support for yourself and breaks when you need them.
- Some people find unusual behaviours, particularly a repetitive behaviour, very irritating. If you feel you can’t contain your irritation, make an excuse to leave the room for a while.
- If you find the person’s behaviour really difficult to deal with, ask for advice from professionals or other carers before you become too stressed. Medication may sometimes be used for these behaviours, they may be a physical cause, don’t assume that it’s due to the progression of the Dementia.
- Remember that it is possible to be the cause of the behaviour through a lack of understanding of what the person is trying to communicate. Try stepping away from the situation, look at the person’s body language and try to understand what they might be feeling at that time. Give the person space to calm down and offer reassurance.
It is not unusual for a person with dementia to go through the motions of the activity they may previously have carried out at work. This can indicate a need to be occupied and to feel there is a purpose and structure to their life.
We all need a purpose in life and it is important to help someone feel involved in day to day life. Perhaps involve them in what you are doing or give them little tasks to do (even if you keep repeating the same task).
You could try:
- Folding laundry
- Setting the table for dinner
- Polishing shoes
- Sorting nuts and bolts
- Sorting the mail
- Preparing dinner
- Caring for house-plants
Memory or Rummage boxes
Memory or Rummage Boxes are a really excellent isolation activity to create and look through together, with a variety of multi-sensory objects that can be handled, looked at, smelt, listened to and even tasted. These can be generic or themed to a topic such as job, hobby, decade or entertainment.
Download our Guide to Creating Memory Boxes here.
View our other activity ideas below
Music can often be a very successful mood changer, helping to lift up or calm down the mood or take you back to a familiar memory. Try singing along or maybe get up for a bit of a dance, dancing even in your own lounge can be very uplifting. Theme a session, write a playlist together to listen to, use CDs or online resources and singalongs.
Create a scrapbook
Write memories down as they occur during reminiscence or chat times, it doesn’t need to be a chronological record, just a collection of memories, perhaps add some of those photos. Once it is compiled it is a lovely book to sit and look through together. Perhaps make more than one - specific books about family, job, holidays, TV shows, pets, hobbies and interest. Handwritten or typed up and printed on a computer, either is fine.
The Television and computer
The Television and computer often feel ‘real’ so may feel like there is company in the house, particularly if you discuss what is going on. Drama and soap operas may be hard to follow and remember plots, so quizzes, music, nature shows, cookery or antique shows are often more effective. Watching old movies together, or TV from the past is a nice reminiscence activity.
Go on a virtual ‘walk’
Go on a virtual ‘walk’ with someone using photos and chat, or via Google street view if you have a smart phone or computer, through familiar streets past and present.
Daily living tasks
Daily living tasks can be an activity like washing up, folding laundry, laying the table, dusting. These help someone feel involved and provides an activity.
Cooking together if this is a safe activity to do, involve your loved one with the menu planning, you could have a theme, such as, baking.
Gardening if the environment is safe and the person is supervised or plant indoor seeds in pots.
Jigsaws, crosswords, quizzes, word searches – are all good distraction, remember it doesn’t need to be completed, just have a go at solving these together
Place things around the home that people can pick up and use or look at. Magazines, objects, photos, books, things that are reminiscent to their own life.
Pampering and Relaxation
Hand massage or manicure, some time to pamper and relax together. Listening to recordings of birds singing, the sea etc. can be very relaxing, as can holding objects with different textures.
Card games, dominoes and board games like Scrabble are a nice way to spend time together, again don’t worry if you don’t complete them or follow the rules. For example just making words from the tiles of the Scrabble game can be challenging and fun without using the board.
With crafts such as knitting, painting or colouring, some of which may be hobbies never tried or long forgotten. Many people find joy rediscovering hobbies. They are a good way of distracting and relaxing people, try doing it together if there are others in the house.
These can be a great way of revisiting the past, don’t worry too much about identifying who is who in the photo. For example an old family photo of a day at the beach can produce lots of conversation about what people are wearing, what they may be doing on a beach, sand, shells, sun cream, picnics, even the British weather.
Phone the family, write them a letter, even use Apps and social media platforms that allow you to use video calling such as Skype, WhatsApp and Zoom if you are able to. Seeing someone’s face as well as hearing their voice, can make you feel closer.