Some people with dementia – and their friends and family – find that there is a stigma around the condition; this means that other people make assumptions about what the person with dementia will now be like, or even judge them or discriminate against them.
In this blog post, Helpline Admiral Nurse Sue Kirkup answers some of your questions about how to deal with stigma and discrimination against people with dementia in the outside world.
Bank clerks, shop assistants, waiters and other service people get impatient with my Mum and can be really rude, which makes her more agitated.
What can I do?
If your mum is happy for you to do so, make the person aware of her diagnosis. This can be done by wearing a sunflower lanyard, which will tell other people that your mum has a hidden disability and may need extra support or patience.
If the person is aware that your mum has dementia and still behaves impatiently, stay calm, but be assertive. Let the person know that it’s important for your mum to have more time and that you would appreciate their help.
Talk to your mum about finding ways of responding to stereotypes and discrimination that work for both of you. For example, you could try using humour to diffuse situations when the negative behaviour of others is problematic.
Sometimes my friends don’t understand why I get nervous about visiting my grandma, who has dementia.
How can I make them understand?
It’s not always easy for family and friends to appreciate the challenges of dementia and how this impacts a person and their loved ones.
One way to help your friends understand the challenges you’re experiencing is to educate them about dementia and, if you can, give specific examples of why you find it difficult visiting your grandma.
You might like to share information and resources on dementia, open up the conversation and invite them to ask questions.
By sharing your experiences, your friends will realise how important this is for you and have a better understanding of what you and your family are going through.
Otherwise, seek support and understanding from other places: join a peer support group, find your local Dementia Friends or carer’s group and remember, you can always call the Admiral Nurse Dementia Helpline on 0800 888 6678.
When I bump into friends in the street, they ignore my dad. It’s as if he doesn’t exist.
How can I get them to take the time to talk to my dad, to treat him like a person?
People with dementia often report that when they are diagnosed, some family and friends reduce their contact or behave differently towards them. This could be due to fear, negative stereotypes or their own worry that they may say or do ‘the wrong thing’.
This can lead to a person with dementia experiencing low self-esteem and self-doubt and can make them feel ashamed or embarrassed about their diagnosis.
Encourage your friends to talk together and to listen to what is needed: whether this be patience, time, feeling included, or being involved in decision making.
Invite them to ask questions about how dementia is affecting you and your dad, and what they can do to help.
Explain to them why it’s important to acknowledge and include your dad in conversation – encourage them to smile and make eye contact with him.
Let them know how important it is for your dad to have his feelings respected and valued and to not be treated differently to anyone else.
My Dad has trouble with unexpected incontinence – sometimes he struggles to recognise when he needs the toilet, and this can lead to accidents when we’re out in public. People can be disparaging and intolerant of it.
How can I make sure this doesn’t happen and, if it does, how do I deal with it?
Unexpected incontinence, especially when out in public, can be really upsetting for both the person with dementia and their loved one. Remember that it isn’t the person with dementia’s fault, nor is it their carer’s, and it’s nothing to be ashamed of.
In terms of prevention, the person with dementia should stay hydrated and have a good, healthy, balanced diet. This can prevent infections and constipation, which can be causes of incontinence.
While you’re out, look out for if the person becomes fidgety or visibly anxious – this could be a sign that they need the toilet.
Notice what times the person usually needs to go to the toilet, and prompt them around those times. If you’re out and about and you see a toilet, it might be an idea to suggest to the person to go, even if they don’t say they need to.
In case unexpected incontinence does happen, it’s useful to have a pair of disposable gloves with you, wet wipes and, if you can, a change of clothes, as well as any other incontinence aids the person needs.
Find the nearest toilet and try and clean the person there. It’s important to clean them up as soon as possible to avoid infection.
When strangers are intolerant of accidents, ignore them. Anyone who’s unable to empathise with the situation is not worth your attention.
If unexpected incontinence is an ongoing problem, get in touch with the person’s GP or local continence advisory service – they’ll be able to provide help and suggestions.
World Alzheimer's Month
Every September, people come together from around the world to raise awareness of Alzheimer’s disease and challenge the stigma around dementia. Find out how we’re raising awareness of Alzheimer’s disease and how you can find support