2.3 Managing how others treat you, and the person you support

How to manage if others treat you differently because of dementia

Many friends and families are incredibly supportive, and treat people living with dementia with love and respect. However, carers have told us that they are sometimes treated differently because of dementia. Negative treatment because of a condition is called stigma.

Anne spoke about her experiences of she and her husband simply being ‘dropped’:

“We have been part of a fund-raising charity event for years. I thought the convenor was late getting in touch and when I enquired, I was told that the committee decided it would be too much for me and Tony… They thought I was too busy being a carer now and Tony would not cope. I was horrified and very upset. Who are they to tell us what we can or cannot manage?”

Here are some examples of how carers have been treated differently and how they have coped with experiencing stigma.

Sometimes friends fall away after the person is diagnosed with dementia. This can be upsetting and disappointing. Geoff said he was surprised when people he thought were best friends just stopped calling. Others he knew less well stuck with him and his partner Michelle. Sometimes friends are anxious about dementia and how to ‘act’ around people living with dementia. Letting them know you are both the same people as last week may lessen their anxiety. Geoff said:

You find out who your real friends are. I cut my losses and decided not to worry. I’ve made some new friends through my support group”

Carers described how others including doctors and healthcare professionals, speak to them, rather than the person with dementia, even when the person is in the room. This is awkward and makes the person with dementia feel invisible and ignored. In a situation like this, Margaret either turns to John and gestures for him to answer or says, “John can answer that question himself”.

Sometimes people with dementia and carers are left out of activities they previously took part in. This can make you feel excluded or isolated. This may be because the organiser doesn’t understand dementia or makes assumptions. If there’s an activity that you or the person would like to be involved in, contact the organiser or ask someone else in the group to advocate on your behalf. Often issues can be resolved, such as making the activity to be more inclusive. For example, Alan had someone help keep score for golf, Christine had another person provide transport to her club meetings after she gave up driving.

Friendship and company are important. These strategies can help you to reach out and keep important friendships in place.

Be assertive with doctors and other professionals

Start your own dementia toolkit

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

To get the best possible care, healthcare professionals should be told that the person you support has dementia. This might include their and your general practitioner (GP), other specialists, and other health professionals, for example the dentist and optician. Talking about dementia offers some suggestions for telling professionals. Dementia might affect other health conditions and treatments the person has. However, some health professionals may not have much experience or knowledge about dementia. Being open about dementia can help them to understand how to best support the person with dementia and you and your needs.

Margaret explains how important it is for other healthcare professionals to know about her father’s dementia, and to support her mum.

“I’m having to say to this consultant –‘ he has dementia’, and that makes a difference to this consultant – how he’s treating him, how he’s talking to him, and how he’s talking to us as well. That was the first time I had to tell someone my dad has dementia and I don’t whether my mum would have said anything if I hadn’t been there”.

Read more about Margaret’s experience.

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

Professionals sometimes assume that people with dementia are not able to make their own decisions. As such, they do not understand how to support them to make decisions about their own care and life. This means that they might ask you to make decisions on behalf of the person you support or make decisions about your treatments that they think are right.

If you feel that this is happening, you may need to advocate for the person you support and yourself. This means you would speak or ask questions on someone’s behalf. When a person is living with dementia, an advocate can ensure the person is listened to and can represent the person’s views and interests. Advocacy is also about mutual respect between all parties. You may need to be assertive in asking questions. You may also decide to delay a decision to allow the person with dementia to fully understand the choices and the possible consequences.

You may be appointed as a Lasting Power of Attorney (LPA) for the person and be able to make decisions on their behalf if they lack mental capacity to make certain decisions about their health and welfare. Find out more about Lasting Power of Attorney.

If the person lacks mental capacity to make decisions an Independent Mental Capacity Advocate (IMCA) can be appointed to make important decisions on their behalf. Find out more about the role of IMCA.

This Dementia Alliance Webinar recording gives suggestions on how a person with dementia can talk with their 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.

During your appointment

If you do not understand what the doctor has said ask them to explain it again

Ask for any words you do not understand to be written down and explained

To help you remember what you talked about, take notes or ask a family member.

Before you leave your appointment

Make sure you have covered everything on your list.

Check you understand what you have talked about. Tell the GP what you understand and ask if this is right

Confirm what should happen next and when, and write it down

Ask what to do if you have any problems or questions

Find out about support groups and information

Ask for copies of any letters written about you.

Source: NHS website – What to ask your doctor.

They also make helpful suggestions for helping you to plan before your appointment and what to do after your appointment. These tips include writing down the questions you want to ask before your appointment and to write down what you talked about and what happens next.

Be assertive in asking for dementia support

Some General Practitioners and specialists who diagnose dementia may not be up-to-date with treatments to manage dementia. Some doctors still believe that medication is the only option. This is not true.

If you are not offered treatments which you can read about on this website, such as counselling 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 the person you support to other services such as:

Occupational Therapy

Physiotherapy

Speech and Language Therapy (who can support with eating and swallowing issues)

Psychology

Social Care

Incontinence services.

You can contact your local authority and make your own request for social care. Social care services can help people stay independent at home for as long as possible.

See Plan Services for support for more information about getting services in place, financial support and any benefits you may be entitled to.

You can also direct healthcare professionals to national clinical guidelines for evidence to support your treatment request. You can also use the guidelines to find out more about recommended treatment options and share with healthcare professionals.

In England, Wales and Northern Ireland National Institute of Clinical Excellence (NICE) guidelines apply. In Scotland Scottish Intercollegiate Guidelines Network (SIGN) guidelines apply.

Jill used suggested questions from their national clinical guidelines to ask her doctor about medication for her partner’s cognitive symptoms. Using the guidance helped her feel she wasn’t challenging the doctor’s judgement. “The doctor was actually very interested in the book I had. After looking at it he wanted his own copy to show to other patients.”

You can also find out more about treatment and support in Managing memory, thinking and perception changes.

Telling others how you want to be supported

Caring is a role that takes time and energy. As a carer, you too will need support.

Family members and friends may offer help but may not know how to provide the most useful support for you. Relatives and friends may be worried about interfering, taking over or disrupting routines. Feeling able to ask for specific support is the best way to get what you need or want. Be ready with suggestions when someone offers help. For example:

Beverly looks after her frail mother and her sister, who has younger onset dementia. After every doctor’s visit with her sister, she phoned her large family to provide updates spending precious time repeating the same story to concerned family members. Beverly asked one of her siblings to take over this role of sharing information and with keeping the family updated.

Andre was getting anxious each time Gerda left him alone at home. He phoned her repeatedly whenever she went out. A retired neighbour offered to help, so Gerda asked him to play cards with Andre when she went out. He was happy to oblige, and this gave Gerda stress-free time for shopping or a visit to the hairdresser.

Sue liked time at home alone. Since Chris’ diagnosis she felt she never had any ‘alone time’. She asked her son to take her husband out to the hardware shop on a regular basis, which both father and son enjoyed. Sue was able to have the quiet time at home she needed.

Sometimes it can be difficult to ask for help. It is not ‘giving up’ or shirking your responsibilities, it’s looking after yourself which is essential when supporting someone long-term.

Talk to family and friends

Think about what things you’d like to do for yourself

Tell others how you would like to be supported