Refusal of care

Refusal of care

It is common for people with dementia to deny accepting care. Different stages of the disease can cause different reasons for this to happen, and it can feel discouraging for you as a caregiver as your intentions are good. One aspect is accepting the reality of the disease. They might express denial of functional or cognitive decline, lack of insight to their situation, a fear of the future, or anticipated stigma from others.

Express your worry.

Approach the subject gently, and let them know that you are worried about them. Be kind and supporting during the conversation.

Express your support.

Tell them that you are on their team, and want what is best for them. The perceived stigma of dementia can intensify if you only talk about symptoms and behaviours you experience and believe is caused by dementia.

Turn focus from problems to solutions.

The fear of dementia might overcloud the understanding of the support friends and family can provide. Coping with difficult situations can be tough, but doing it alone does not help. Approach the subject with how you can manage it together, not the burdensome symptoms and behaviours you experience.

Stay calm when talking about the situation.

Prepare for many conversations, as it might take time for the person to acknowledge what is going on. If conversations you have are unpleasant, it can create hesitation for the person to come to you when are ready to talk about it.
Later in the disease, the person might not understanding what is going on, which can cause refusal of care, they can feel talked down to or bossed around, or they are misinterpreting the environment. All of these reasons can be linked to a feeling from the person with dementia of losing control. There is a dedicated role-play in the DemiCare-app called “Physical aggressive behaviour” where you can play out the scenario of a person with dementia refusing to wash.

Be flexible.

You might have a tight schedule of things you have planned for a day, and if the person refuses to take a bath when you planned, it is understandable that you get annoyed. It might be frustrating to change your plans, but getting angry does not help. Remain calm, and think of how you can modify your plans: can a quick wash be enough for today?

Keep up previous routines.

It can be confusing for the person with dementia if you change the routines of their daily life. If they usually take a walk after dinner, trying to force them to accompany you to a walk during the day can be confusing, and thereby lead to refusal.

Do not give up.

Gentle motivational approaches might help, so do not give up immediately. If the person refuses to do something or the situation gets aggressive, kindly distract them, and try again later.

Give the person choices.

Giving the person choices can help to maintain their feeling of control of the situation. Remember to ask questions where you can accept every answer. Instead of asking, “what would you like to eat”, where a possible answer is nothing – try “do you want bread or porridge?”

Use simple phrases.

When guiding or coaching someone in daily activities, use simple phrases with less room for misunderstanding. “Here’s the soap.” “Wash your arm.”

Encourage independence.

Make the situation to something the person can manage. For eating, you can serve finger foods and gently place the person’s hand on or near the food. Lay out their outfit in the order they are supposed to take them on, to avoid underwear on top of pants. Try to think of situations where the person loses their independence. How can you facilitate independence in preparations?

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The DemiCare project has been funded by the Active and Assisted Living programme. AAL is a European programme funding innovation that keeps people connected, healthy, active and happy into their old age.

AAL supports the development of products and services that make a real difference to people’s lives - for those facing some of the challenges of ageing and for those who care for older people if they need help.

The project has an overall budget of 2.029.091,76 €, to which the AAL will contribute with 1.477.535,07 €