Woman listening to wishes

Supporting people living with dementia to engage with care

Sharing a dementia diagnosis helps others to understand it and for you to come to terms with it

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    Sometimes people will refuse the care you offer. This can be difficult to manage. We help you to understand why a person living with dementia might refuse your help and what you can do.

    Why your client may refuse care and support

    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. Your client may not recognise that their abilities and behaviours have changed as a result of their dementia. This can be caused by physical changes in the brain.
    • Denial. Your client 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 specific things, such as leaving the gas on, or may deny having a diagnosis of dementia.

    You can read more about coping with denial and lack of insight here.
    There may be other reasons why your client 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 be having 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.

    You can read more about strategies to support someone who denies their diagnosis here.

    How to support 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 how they feel. This may lead to your client 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 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, allows you to be centred on the person and their individual needs and wishes. This can reduce anxiety for your client. It can also help build a strong, lasting, and trusting relationship with them.
    • Establishing trust. A person living with dementia needs to be able to trust the person 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. Starting with short regular visits may help with building this relationship. 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 suggests strategies to support someone living with dementia to accept three important areas of care personal care, food, and taking medication.

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    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.

    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

    Eating nutritious, balanced and regular meals and staying hydrated is an important part of everyday life. Changes to your client’s diet may affect their health or how they take their medication. It can be very worrying if your client refuses to eat or drink what has been prepared. Finding out some background information about your client and their eating and drinking habits will be helpful. Ask your client:

    • 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?

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

    You can read more about eating well here.

    Refusing medication

    When someone living with dementia refuses to take their regular medicines, this might lead to serious consequences and should be dealt with urgently. It is helpful to work out why someone is refusing their medicines. Ask your client 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 your client trusts the person offering the medicine is important. Even if the person has forgotten the care worker who is visiting with medicines, they may remember whether they trust the person or the feelings they have towards care worker.

    Keeping safe at home

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