Those who are caring for people living with dementia must try to see the world through through their eyes, says Leah Bisiani, managing director of Uplifting Dementia, who spoke at the National Dementia Conference on Tuesday.
Dementia is complex. Every person with dementia experiences it differently. But because of the complexity, people often respond with fear and resort to stereotypes.
But by getting to know the person, and finding out everything you can about them, you will be better placed to truly help.
By getting to understand the person, carers can use their own strengths and abilities to support them, and help them retain their dignity, humanity, and their very essence of themselves.
Don’t use pessimistic terminology
Terms such a victim, afflicted, burden, suffering, and challenging behaviour are not appropriate for use in describing people living with dementia, said Bisiani.
Similarly, words such as problematic, inappropriate, and attention seeking can be perceived as overly judgemental.
‘Behaviours’ can be a way that people living with dementia communicate their needs. Rather than judging the behaviour, try to understand the non-verbal message the person may be trying to communicate.
Often behaviours arise from frustrations that their needs are not being met, or about their loss of ability.
Understand the type of dementia they have
Every individual is affected by dementia differently, and every type of dementia has different symptoms and a different progression. You can only care appropriately for a person living with dementia if you know what type of dementia they have.
Know everything there is to know about the person
Finding out everything you can about a person is a way that you can show them you genuinely care about them. Adjust their lifestyle so that the transition to care imposes as little change as possible on the person.
Ms Bisiani said that by taking exceptional care writing assessments and care plans, and by making sure she knew everything about the person and incorporating what she found out into those plans, she reduced reports of ‘behaviour’ to zero within 12 months, and residents were “very happy and thrived”.
Know their culture, religion, language – what is in their soul.
Try to minimise the amount of change and have realistic expectations for people who are living with dementia. Cognitive changes that occur for some people living with dementia can make them more prone to stress.
Manage medical intervention
Medical intervention needs to be managed well. Of course, medication will be required, such as for respiratory disease or pain.
But chemical restraint and sedation overuse is a form of elder abuse, said Ms Bisiani.
Ensure basic needs are met
Nutrition and hydration are extremely important, because if not maintained, people living with dementia decline rapidly – remembering that everyone requires good nutrition and hydration.
Dealing with aggression
Everyone feels anger, and aggression occurs in all types of people – not just people who are living with dementia. Often, aggression can be a sign that the person is trying to communicate something; try to tap into what that might be.
- Remove distractions
- Respect personal space
- Remain calm
- Don’t argue back
- Be kind
- Be understanding
- Be calm
- Use non-threatening eye contact
- Use their name or preferred title
- Be respectful
- Don’t overwhelm with too much information
- Don’t patronise
- Leave the room if required
- Don’t use any form of chemical restraint
Focus on the person’s strengths
Talk about what they can do. Help them retain their independence.
Make sure they are able to communicate
If the person needs glasses, or a hearing aid, or dentures, make sure they have them.
Develop trust and a rapport with the person. Respect them, and show them you value them in their own right.
Be aware of your own body language. Don’t rush, or act anxiously. People living with dementia will pick up on it, and may respond with the same type of behaviour.
Observe the body language of the person. It may reveal things they are trying to communication.
Loneliness can be a powerfully destructive force for everyone, not only people living with dementia.
Retain independence for as long as possible
It can be tempting to do things yourself because it’s quicker, but when you don’t allow people living with dementia to do things themselves, you are robbing them of an opportunity to maintain their independence, and in effect encouraging the deterioration of the person.
Validate their reality
Sometimes the reality of a situation is more upsetting than the person living with dementia’s perception of the situation. In these situations it’s preferable to confirm and validate the person’s reality.
Ms Bisiani gave the example of a women who was asking for husband who had died many years earlier. Rather than reminding her that he had died, Ms Bisiani suggested validating her reality – for example by telling her he had just gone out and would be back soon. They will accept it, they won’t have to be traumatised by news the husband was deceased, she said.
Keep active in body and mind
Usually, even in the advanced stages of dementia, people will be able to do things themselves. Ask what they want to do – and do it! Ms Bisiani gave examples of tai chi, dancing, singing, going to the markets and the beach, and visiting the zoo.
Music, singing, gardening, and cooking are all activities that people living with dementia are likely to enjoy. Grow a herb garden. Prepare food for Christmas. Enabling people living with dementia to continue performing these activities can be really important.
The sexuality of people with dementia can be distressing for family, but Ms Bisiani said being able to act on your sexuality is a human right, and though it of course must be kept appropriate and private, it can be managed.
Providing beautiful, peaceful places can be a huge benefit to people who are living with dementia. Ms Bisiani suggesting building sanctuary gardens, and private and cosy rooms.
Be respectful of the other residents and maintain sound at pleasant levels. Play music – Ms Bisiani said that she has known people who don’t speak to break out signing when music is played.
People who are living with dementia are still people. They have stories to tell, they have their own personalities, they are individuals – trying to find a new way forward.