2.4 Manage how others treat you

How to manage if others treat you differently because you have dementia

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Many friends and families are incredibly supportive, and treat people living with dementia with love and respect.
However, people with dementia have told us that they are sometimes treated differently because they have dementia. This negative treatment is sometimes call stigma. People have shared some examples of this treatment and the strategies they use for when they experience stigma.

Sometimes rather than speaking directly to you, a person will talk to your spouse (wife, husband or partner) or whoever else is with you, as if you are not there. This made some people with dementia feel invisible or ignored.

Things to try:

Join the conversation – remind the person you are there, you are interested and have your own views and opinions. If you find it hard to interrupt or raise your voice, try raising your hand.

Ask the person you are with to bring you into the conversation, for example “Maybe Sarah can answer that question herself”
Both strategies help you to get involved in the conversation.

You might find you are left out of an activity that you would have taken part in or been invited to before your dementia diagnosis. This can make people feel excluded, or isolated.

Suggested strategies:

You might choose to talk to the person organising the activity yourself and ask to be included. Explain what you can still do or what you may need support with.

You could ask someone you trust to ask on your behalf. This might be someone else who is involved in the activity who might wonder where you are, or someone close to you like a close friend or family member.

Some people find it easier to write things down rather than ask directly.

These conversations might help other people understand dementia a little more. It might help them to think about how the activity might be changed, or doing a different, more inclusive activity. For example, someone helps you keep score for golf, or the group decides to play lawn bowls or cook together. These strategies can remind the person how to include you next time.

Keep in touch

People with dementia say that friends fall away after their diagnosis. This can be really disappointing and upsetting when a close friend stops calling or visiting. This can make people feel lonely.

Be assertive with doctors and other professionals

To get the best possible care and support, it is a good idea to tell your general practitioner (GP), other specialists, and other health professionals, for example your dentist and optician that you have dementia. Find suggestions in Telling others about your dementia diagnosis).

Your dementia might affect other health conditions and treatments. However, some health professionals may not have much experience or knowledge about dementia. Being open about your dementia can help them to understand how to best support you.

Be assertive so that you’re involved in decisions about your dementia care and support

Professionals sometimes assume that people with dementia are not able to make their own decisions. They may not understand how best to support you to make decisions about your own care and life. This means that they might make decisions about your treatments for you or expect that your carer makes those decisions on your behalf. They might not provide you with enough information about your options or choices. They might talk too fast, or not give you enough time to take in information so you can have a say.

If you feel that this is happening to you, you might need to be confident in asking questions. It is also important not to agree to something until you fully understand other options available and the possible consequences.

This Dementia Alliance Webinar recording gives suggestions on how to talk with your doctor about dementia

Find five top tips to get the most out of your GP appointment

The NHS website also has general top tips and a checklist of things you might want to ask at your GP appointment

Be assertive in asking for dementia treatments

Some doctors who diagnose dementia may not be up-to-date with all the treatments used to manage dementia. Some still believe that medication is the only option. This is untrue. There are many other treatments. For more information read Dealing with memory and thinking difficulties.

If you are not offered treatments which you’ve read about on this website, then you might need to ask your doctor how you can be referred to those services.
A hospital specialist or your GP may be able to refer you to other services who can provide support such as:

Occupational Therapy

Physiotherapy

Speech Therapy

Psychology

Social Services

You can also contact your local authority and make your own request for a social service assessment to help you stay independent at home.
Also read Plan services for support for more information.

Start your own dementia toolkit

Clicking here will open the toolkit information page where you can learn how to create your own dementia toolkit.

Tips for telling others how you’d like to be supported

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Often friends and family are well intentioned, but don’t know how to support people with dementia in the way they would like.

It may help everyone if family and friends are told how you want to be supported.
Here are some examples:

“I’m still the same person as before, please talk to me in the same way”

“If I’m a little slow or forgetful, please give me time. I’d prefer you don’t correct me I usually get there at my own speed”

“I hope this doesn’t change things. I want to keep walking with the group”

“I have trouble with names, so remind me of the names of people we’re going to have dinner with before we arrive.”

“I need my diary to get organised, so can you please phone me to make plans so I can write it straight into my diary. If you tell me while we’re out, I might forget”

“I’m no longer able to drive, so if you could offer me a lift when we go out, I’d really appreciate it”

Tips for telling others how you don’t want to be helped

‭You might feel your family or friends are over protective.
You may feel like they do too much for you or try to take over. Sometimes it can be difficult to say anything and you may want to avoid an argument, seem ungrateful, or hurt the other person’s feelings. Here are some examples that people with dementia have told us were helpful for them:

“I sometimes feel a little useless because you do so much for me. Can I keep doing the shopping even though I may forget things?”

“I’ve been thinking about going out for my walk by myself again. I know you like coming along to keep an eye on me in case I get lost, but I’d like to walk by myself sometimes. I can bring my phone and call you if I get lost, but I don’t think I will get lost.”

“I know that I missed a few appointments, which is why you’re in charge of my calendar now. I feel like I don’t really have a say in the schedule though. Can I also put things into the calendar?”

“I don’t like it when you talk over me when we’re at the doctor. It makes me feel like I don’t have a say in the decision.”

Take action

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Reflection

Identify times when you might have felt others are treating you differently because you have dementia.

Use the tips on this page or let people know how you would like to be supported.

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Take action against stigma

Visit FlippingStigma to take action against stigma associated with dementia. It has been designed by people with dementia to help other

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