Improving the Care Experience for People with Dementia and their Caregivers
This is such a confusing, difficult and challenging time to be caring for people living with dementia. The restrictions and lack of resources caused by COVID-19 has had a negative effect on the people living with dementia, who may have limited access to social interaction and meaningful activity and their carers who are unable to provide the level of care they aspire to.
I am always inspired by Teepa Snow, an occupational therapist by trade and a care and education specialist who has been called “the horse whisperer of dementia” because of her remarkable skills. So, I wanted to share with you Teepa’s top 5 tips to improve the situation for caregivers and the people they care for.
- Step back
When an interaction is not going well, you have two choices. Carry on regardless and watch things get worse, or step back and think. Your brain is much better than theirs so use it. What’s happening is often more complicated than it first seems. Have your well-intentioned actions made things worse? It really helps to try to put yourself in their shoes and find out what they are trying to communicate with the behaviour that is causing you both frustration and distress. Could they be tired, hungry or in pain, or are they feeling lonely, unloved and not needed? If you can identify an unmet need and go some way to try and resolve it life becomes easier for both of you.
- Respond (don’t react)
If someone doesn’t react the way you wanted or expected it’s easy to get upset or even angry. Teepa says “stop reacting”. Don’t try to correct them, point out their errors or raise your voice. Instead try repeating back to them what they have said to you to acknowledge and validate their feelings. It can be helpful to apologise and say, “I’m sorry this happened” or “sorry I upset you”. Then start again.
- Make plans but expect them to change
It’s always good to have a plan. It helps us to get organised, focus our actions and feel positive. But in dementia care it is quite likely that things don’t go according to plan. A plan that worked well yesterday may not work today. Don’t worry. Take a breath and try plan B, C or even D instead.
- Figure out what you can/can’t control
Some things are just impossible to control. You can’t control someone’s dementia. You have no control over how someone’s past experiences, preferences and routines have influenced their behaviour now. But you do have some control over their environment, physical and sensory experiences, objects they have access to and how they spend their time. Pay attention to what makes them feel valued, needed, loved and important as well as what helps them to relax or recharge their batteries. A walk in the garden, a hand massage or helping with the washing up can have such a positive effect.
Change what you can and let go of the rest.
- Take care of yourself
When, despite your very best efforts, nothing is working and you can feel yourself getting frustrated, even angry. It’s important to take time out. The person you are caring for is likely to pick up on your frustration and this only makes things worse. They may not understand what you are saying or why you feel like you do, but they will be affected by your tone of voice, facial expressions and your body language. Remember this when you roll your eyes at your colleagues in frustration or inadvertently stand with your hands on your hips.
Step away, breathe deeply to calm yourself and try to re-focus. Walk outside if you can, to clear your head and gain a new perspective. It may help to find someone to talk to and it’s ok to ask for help. It’s not being a failure; dementia is hard work! It may not seem like it sometimes, but your efforts are appreciated, you are doing an amazing job. Take good care of yourself.
You can see more of Teepa Snow’s caregiver tips and practical techniques on YouTube or look her up on Facebook.