By Jane Verity ©Dementia Care International
Our attitude and approach to our role of family carer can make or break the experience, both for the person with dementia and for their carers.
The first step to success is to change the way you think of your role from that of a carer to building a supportive partnership where your role becomes that of the supportive partner. Here are some of the powerful reasons behind this shift in thinking.
When you think of yourself as a carer, whereby you give care, it implies that the other person becomes a care recipient. This viewpoint in family care situations can tip the relationship balance in several negative ways and may result in the carer slowly taking over and gradually losing respect for the person in care.
This imbalance can prompt unpleasant, angry and frustrated outbursts from both the carer, and from the person living with the diagnosis because they do not wish to be a care recipient, nor do they want help or care.
People with dementia want to be needed and useful, and still able to care. They seek support and encouragement so they can continue to be engaged in meaningful activities. They need to be contributing citizens still making a difference in their world.
When you think of yourself as a supportive partner it implies a partnership of two equal human beings. This new approach and attitude fosters respect for one another. Avoid the temptation to take on a parenting role. ‘Parents’ tend to respond to adolescent children’s challenging behaviour by revealing their own frustrations and aggression, and this can result in more challenging behaviour. If we ‘parent’ people with dementia, whether through tone of voice, behaviour, or the way directions are given, the person with dementia is likely to become agitated. This is an expression of a need that is not being met – the need to be treated as an equal.
A Supportive Partner Needs To:
- Be in the moment with the person who has dementia and meet them exactly where they are. The person with dementia may find it challenging to imagine the future, and may not remember the past, but they are experts at living in the moment. Being in the moment with the person means being fully present with them in body, mind and spirit.
- Use empathy, intuition and creativity to discover out what the person with dementia is attempting to communicate. Work with the person and his/her words and gestures, to discover their meaning and avoid unnecessary frustration.
- Set the person up for success. This could be as simple as picking up where they stall. You only need to help them restart by showing them the next step. An example might be when a person brushing their teeth stops with the toothbrush in one hand and the paste in the other – no longer knowing what step comes next. A supportive partner would then squeeze the paste onto the brush by holding the person’s hands and doing the action with them. Most likely the person with dementia can now complete the rest of the action independently.
- Create opportunities for spontaneity and laughter. People with dementia are masters in being spontaneous. An example of this came one day when my mum and I were walking past the aquarium in our office and I said, ‘What if we wave to the fish?’ Mum’s whole face lit up. To my surprise, she put her hand straight into the aquarium and vigorously waved in the water. The fish fled in all directions. It was so spontaneous, unplanned and hilarious that we both burst out laughing.
It all comes down to the need to shift your thinking from that of a carer to building a supportive partnership.
It is important to understand that we can never change the behaviour of someone with dementia, especially through reprimanding or telling them off. Whenever we try to change the person with dementia, they will react with challenging behaviour. To change any other person’s behaviour, we must first change our own.
‘Our actions create either happiness or suffering.’ Dalai Lama
When the social inhibitions which regulate human responses lift in a person with dementia, there are no longer any ‘buttons’ to push, such as guilt, embarrassment or feeling bad. Every time you become frustrated or angry and try to push these buttons that no longer exist, you will be met in return with expressions of frustration and anger. The person will feel offended and angry by what appears to be your unjustified attack.
If you were passed a serving platter with various sized pieces of cake, there is a good chance you would spot the largest piece. However as soon as you do, you’re likely to hear your own mother’s voice, ‘Don’t be greedy! You do not take the largest piece! Take the smallest one or the one closest to you.’
No matter how old we are, mother’s voice still rules. The person with dementia is different as their social inhibitions that normally regulate their responses have lifted. lf you now pass the same serving platter to a person who has dementia, they don’t just by chance happen to spot the biggest piece, they will deliberately look for the biggest piece and they go for it, even if it means they have to lean over to the opposite side of the platter.
There are two choices of how to respond to this and similar occasions. If you believe that it is your role to maintain the person’s social skills, you might even have promised the person that you would do so, you are likely to respond by telling the person off for taking the biggest piece. This will always result in the person with dementia becoming angry.
It may be helpful to remember that there is only one thing that counts for the person with dementia and that is to live fully in the moment. They don’t care what their beliefs about behaviour were five years ago – all that matters is what is happening right now, in this moment. They wish to be happy and to make other people happy.
Accept that you can no longer press ‘buttons’ of guilt, embarrassment or feeling bad and make a big celebration out of the situation and say, ‘You got the biggest piece and you so deserve it.’ This approach will bring a sparkle to the eyes of the person with dementia who can now savour the biggest piece with joy.
Let go of authority and the need to change the behaviour of the person with dementia and instead change your own attitudes and behaviour. This shift enables challenging situations to become pleasant experiences and empowers you to become a supportive partner, rather than the person’s carer.