Helping the person you support to accept care services and support

Accepting help from care services can sometimes be difficult. The person you support me be worried they are losing their independence or may not fully understand how much help they need because of their dementia. You can help the person you support to understand why accepting help from care services can help them – and you – to live more positively with dementia.

Why the person you support may refuse care services and support?

Sometimes people will refuse care or help at home. This can be difficult to manage, especially if you already provide a lot of support or are unable to help. We help you to understand why a person living with dementia might refuse help and what you can do.

Everyone has a right to refuse something they do not want. However, there are symptoms of dementia which may make it harder for someone living with dementia to recognise and accept support. These include:

• Lack of insight. Someone living with dementia may not recognise their abilities and behaviours have changed because of their dementia. This can be caused by physical changes in the brain.
• Denial. Someone living with dementia may not believe or understand certain facts or events that are happening. It is a psychological reaction to protect their feelings. It can be helpful to remember that denial is often not deliberate. Many people may not even be aware that they are in denial.

So, a person living with dementia, who may be afraid of other’s people’s reactions to them, may deny having problems or needing support. People living with dementia may deny doing certain things, such as leaving the gas on, or may deny having a diagnosis of dementia

There may be other reasons why the person you support  may refuse help or support. These reasons could be:

• They may be struggling to communicate verbally (speech and talking) or non-verbally (gestures and body language) how they feel about the support.
• They may have difficulty understanding what people are saying or they don’t understand what they are being asked to do.
• They might not like what is being asked of them – for example going to bed at a time they don’t want to, or being made a meal when they aren’t hungry.
• They don’t trust the person offering the support.
• They feel they are being bossed about and refusing is to keep a sense of control over their choices and preferences.
• They want to remain independent and see accepting help with care and support as a sign of losing their independence.
• Many of these difficulties accepting care and support can show themselves as stress and distress.
• Using care and support service might not be a common part of their or your culture.

There may be other reasons why the person you support  may refuse help or support. These reasons could be:

• They may be struggling to communicate verbally (speech and talking) or non-verbally (gestures and body language) how they feel about the support.
• They may have difficulty understanding what people are saying or they don’t understand what they are being asked to do.
• They might not like what is being asked of them – for example going to bed at a time they don’t want to, or being made a meal when they aren’t hungry.
• They don’t trust the person offering the support.
• They feel they are being bossed about and refusing is to keep a sense of control over their choices and preferences.
• They want to remain independent and see accepting help with care and support as a sign of losing their independence.
• Many of these difficulties accepting care and support can show themselves as stress and distress.
• Using care and support service might not be a common part of their or your culture.

How to help people to accept help and support?

It is useful to give the person who has received a diagnosis of dementia time and space to think about it, and to think about how it might make them feel. This may result in their recognising that they need help with care and support.

Here are some tips that could be helpful when encouraging someone living with dementia to engage with and accept the care and support services they may need.

• Recognise that “insight into dementia” can be variable. Like all people, those living with dementia can have good and bad days. There may be some days when the person living with dementia may be more lucid (aware) and remember their diagnosis of dementia and be more willing to accept help. This can be true of different times of day too. Recognising these signs may be helpful to you in deciding when to raise the topic of the person living with dementia needing some help with care and support.
• Be flexible. Many people living with dementia may have developed lifelong routines and rituals, such as shaving every morning, or having a bath every Sunday. It may be challenging for a care worker to be flexible depending on their own background, training and time pressures. Some care workers may stick to what has been written in a care plan. However, being as flexible as possible, and enabling the care worker to be flexible can help to meet the needs and wishes of the person you support. This can reduce their anxiety and help build a strong, lasting, and trusting relationship with those providing care.
• Establishing trust. The person needs to be able to trust those who will be offering help and support. We all have different approaches to trusting a stranger. It might take time and patience for trust to build.
• Build on the relationship gradually. Planning care with short regular visits to start with may help with building a trusting relationship. Encourage any care worker to build on the relationship gradually. It may start with visits for a walk in the park or for a cup of tea, then moving on to helping with light housework, before offering personal care.

The next section describes tips and strategies to support someone living with dementia to accept three important types of care: personal care, food and hydration, and taking medication.

Supporting people to accept personal care

Personal care is an intimate activity. Many people will have strong emotions and feelings accepting this help. Trying to force personal care can constitute abuse; however, neglecting personal care needs can be considered abusive too. It is important to find alternative ways to provide care that is acceptable to someone who needs it.

Below is an example of a home care worker (Sally) providing personal care to Mrs Gupta by focusing on Mrs Gupta’s personal preferences and habits.

Sally has been told to give Mrs Gupta a bath every other day. Mrs Gupta strongly refused a bath every time Sally has suggested it. Sally decides to ask Mrs Gupta how often she used to bathe, and whether she preferred the shower or the bath. Mrs Gupta tells Sally this depends whether it is summer or winter. In summer, she likes a bath on the weekend, a stand-up shower mid-week, and a wash in the sink the rest of the week. In winter, she does not have a mid-week shower. Knowing this has helped Sally to offer Mrs Gupta a bath on the weekend and a wash in the sink on the other days. This ensured that Mrs Gupta’s personal care needs were met with no disruption to her routines and preferences.

Refusing food and drink

Eating nutritious, balanced and regular meals and staying hydrated is an important part of everyday life. It can be very worrying if a person living with dementia refuses to eat what has been prepared. Finding out some background information about the person and their eating and drinking habits will be helpful. Some of these questions may help:

• What food and drink do they like and dislike?
• Can they use cutlery or do they prefer using their hands?
• Can they see and recognise the food they like?
• Have they had any changes in their appetite or the kinds of food they like?
• Are they drinking plenty of liquids throughout the day to stay hydrated?
• Are they having any problems swallowing?
• Do they have any special dietary requirements or restrictions (relating to their health or culture).

This information will help you to plan for a successful mealtime experience.

Refusing medication

When someone living with dementia refuses to take their regular medicines, this might lead to serious consequences and therefore should be dealt with urgently. It is helpful to work out why someone is refusing their medicines.

Ask the person you support whether it tastes funny, or if they are having difficulty swallowing, or whether they are worried about a side-effect they remember from the last time they took the same medicine.

Some people may refuse to take medicine because they do not understand why they need to take it or have forgotten what it is for. It is important to clearly explain this. Use words, pictures and symbols to show why the medicine is important may be helpful.

Whether the person you support trusts the person offering the medicine is important. Often, even if they may have forgotten who is giving them the medicines, they may remember whether they trust the person or the feelings they have towards their care worker.

Keeping safe at home

You can find more information about keeping safe in the home here.