Anyone who has cared for someone with Dementia will say that it is quite unlike caring for someone with any other disease. For many other injuries and illnesses, often we can see gradual, or even rapid, improvements and those glimmers of hope help us to realise that our loved one will be on the mend very soon. However Dementia is a contrary disease and it changes the person who has it. Without warning and without regard for circumstances, day, time or occasion, it can change the mind, emotions and personality of those who suffer from it. Anyone who has cared for a loved one with Dementia will attest that it is difficult every day for both the carer and the loved one. Having said that, we do have some helpful tips on what to do, and what not to do, when you are caring for someone with Dementia.
- Do create and encourage a calm environment. This includes comfortable temperatures, quiet sounds and a visually pleasing environment. It is important to tidy up messy areas, remove clutter and remove busy and confusing fabric patterns on cushions, rugs and bedding. Neutral palettes help to calm the mind and reduce confusion and frustration.
- Do support independence. People love to continue to be able to do things within their capabilities, even if it means buying different utensils to avoid breakages. You can buy plastic cups, melamine plates, and cut food into small pieces stored in the fridge, which will help your loved one to continue to remain independent. Not only will your loved one’s mind remain active by doing these things for themselves when they can, but you are also helping them to maintain their dignity.
- Do keep it simple. Keep your language simple – speak in simple sentences, give simple instructions and keep it to one point at a time. The easier it is to understand, the easier it will be to follow. Always give your loved one the benefit of the doubt and speak to them as if they understand, but remember to exercise patience if they forget or ask again.
- Do stick to a routine. People with dementia have difficulty in understanding and adapting to change, so it is a great idea to establish routines throughout the day, and even keep them in visible areas around the home. By adhering to routine and familiar meal and bed times, your loved one will feel more stable in their home and when they sleep at night.
- Do respond to your loved one’s feelings. Your loved one will still have feelings and may express them more demonstrably because they can’t express them verbally. Despite the brain losing some abilities, it still experiences happiness, so acknowledge and respond to your loved one’s feelings, not just their words.
- Do be patient and flexible. You will need to expect the unexpected when you are caring for a loved one with dementia. Use calming techniques when you see they are becoming agitated or frustrated, mirror their joy when you see they are happy. And one very important thing to remember is that you may need some respite from caring for your loved one. Asking for some time out doesn’t mean you love them any less, but it will give you some much needed time to yourself to recharge your batteries.
Now that we have talked about what to do, let’s talk about what not to do.
- Don’t speak to the person as if he or she were a child. It may be difficult to avoid this, however talking to them like a child may lead them to feel undignified. It can be easy to hurt your loved one’s feelings without meaning to, simply by speaking differently to them. Sometimes these good intentions are misunderstood by your loved one.
- Don’t scold or argue with your loved one. We understand it can be frustrating, but take a deep breath and remember that they are not intentionally making errors or being difficult.
- Don’t berate the person’s behaviour. Try to focus their attention and behavior elsewhere. A great technique is to divert their attention to something unrelated, like a bird in the tree, or a magazine. This can often calm the situation quite quickly and can avoid any possible safety risk that may have otherwise occurred.
- Don’t remind them how many times you have told them before. We understand it can be difficult for you to repeat yourself, however your loved one is only asking because they can’t remember you saying it before. Such short term memories are very difficult for them to recall, and quite often they live in the now, or in the distant past. It is lovely to have your loved one tell stories of their youth, even if you are certain you have heard it before. It will help to remember their happy, younger days.
- Don’t distance yourself physically or emotionally. So many emotions are conveyed through human touch, so even if they can’t verbalise their feelings or understand your words, they will be able to understand body language through touch.
- Don’t let dementia scare you. It is a difficult disease to understand and even more difficult to fight. The best way to treat your loved one is with love, compassion and support.
- Don’t talk as if your loved one isn’t there. Nobody likes to be talked about, especially directly in front of them. They may understand more than you realise.
- Don’t fight it. While there are some activities we can do to slow the decline, Dementia follows its own rules. There are many support groups, and education pieces from your local Home Care Assistance office, on caring for people with Dementia. The more you experience the disease through education and witnessing it first hand, the more your understanding of it will improve. The easiest way to deal with it is to take the path of least resistance. If your loved one says that burglars came in and turned on all the lights in the middle of the night, then agree with them and put measures in place to lock doors and windows. There is no point in arguing with them because they truly believe it happened.
Dementia can be frustrating, agonising and worrying for everyone, so try to remember to treat your loved one with kindness, compassion and love. Every good day is a great one to remember. Every not so good day is an opportunity to reset for the next. Showing love in your actions and words can help both you and your loved one navigate the Dementia journey in the most gentle and calm way possible.