2.2 Talking about dementia

Talk about dementia to help move forward

Talking about the dementia diagnosis with the person you support can be a positive step forward. It can help you both express feelings and support each other. Talking about the diagnosis and planning together may help you adapt to the changes dementia may bring and help you to find a way forward. By talking together, you can think about sharing the diagnosis with others too.

Josef knew Esther was frightened of her future with dementia. She was reluctant to talk about it, or share the diagnosis with the family. Josef started the conversation off saying “You know how your memory has been a problem. Can we talk about how we can tackle this together?” Esther was still reluctant, but Josef emphasised that they had always tackled problems together, and this was no different. With reassurance, Esther gradually opened up and felt more confident about planning the future.

Talking can help you work out what you need now and in the future. Avoiding the topic of dementia can result in you and the person feeling isolated and lonely, even in strong relationships.

It can be a difficult conversation to start but talking about dementia can make it feel more normal.

The person with dementia may not want to talk about their diagnosis

Start your own dementia toolkit

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

The person with dementia may not want to talk about the diagnosis with you or might ask you not to tell anyone. This can be difficult. If you do talk about dementia to your family you may feel disloyal or guilty; but if you ‘cover up’ their dementia, you may feel you are deceiving concerned family or friends.

The person you support may not be ready to talk about their diagnosis for many reasons:

They may need more time to come to terms with their diagnosis.

Give the person time, but bring up the topic from time to time, providing gentle support and reassurance when you do:

Paulette asked her husband with dementia for him to support her. “Devon has always been the provider, the supporter and the planner in our family. If he feels like he is supporting me, he is able to continue in his usual role. This gives him confidence that he will manage to talk about his dementia.”

Bill, a person living with younger onset dementia, didn’t want to tell anyone he had dementia until he had a plan. Once his plan was in place, he started telling people: “I have dementia, and this is my plan to deal with it”.

Wendy told her husband “We are a team, and together we’ll manage”.

Denying dementia

The person may deny their diagnosis or symptoms. This may indicate the person is fearful about the condition, the future or how others may view them. Denial may be part of their coping process and they need time and reassurance. Insisting there is a problem can lead to further resistance or anger.

Peter was getting exasperated. Mary insisted that there was nothing wrong with her and she just had a bad day when they saw the specialist. Peter eventually decided to go the couples support group alone. He said “I came back quite excited. The group wasn’t doom and gloom and they do social things together. I managed to get Mary out to a lunch they organised. A couple of people with dementia talked to Mary and she didn’t realise they had dementia. It took quite some time, but gradually Mary seemed to realise she wasn’t ‘different’ and life goes on, even with dementia.” Listening to others with dementia talk about how they are living full lives after diagnosis can be helpful. The section of this website for people with dementia provides positive steps to cope with feelings and taking positive actions.

A lack of understanding about dementia

Sometimes people do not understand the symptoms they are experiencing and people with certain types of dementias may lack understanding and awareness of their condition. This is usually caused by changes in the brain, especially the frontal lobes (the regions of the brain behind the forehead). The person may not be aware of any issues they are having and become angry or withdrawn if you try to talk about dementia. This is not simply denying dementia or being difficult. In these cases, it is important for you to get support. Speak with your doctor for a referral to a psychologist or social worker. They can help you to develop strategies to cope and improve your well-being.

Read more about the difference between denial and lack of insight into dementia

A short video about lack of awareness is available at Dementia Carers

Family and friends will react to dementia in different ways

You, and the person you support may worry about how other people will react to their diagnosis. People with dementia and carers have described a range of reactions by family and friends when told about dementia.

Many family and friends are supportive. They listen, make useful suggestions, offer practical help and make accommodations without making a fuss. This makes sharing the diagnosis a positive experience. You may feel very supported.

Some family and friends are over protective, and they might try to take over or do too much for the person.

Some family and friends don’t know what to say and even avoid the topic. This can result in feeling embarrassed or awkward when these people are around.

Sometimes, people might question whether the person really has dementia and may not understand how it affects the person. They may make unhelpful comments such as “You don’t look like you have dementia”, or “You can remember when you were at school so why don’t you remember what we talked about five minutes ago?”. This may lead to not feeling believed or understood. Or you might understand it as the person not seeing you any differently.

This Dementia Alliance International video shows 14 people with dementia talking about their experience of being told they don’t ‘look like’ they have dementia.

Some family and friends can become upset by the news. Sometimes this feels unhelpful if you don’t want sympathy or pity. Or you may find it comforting that they care so much.

Next, we suggest ideas for sharing the dementia diagnosis.

Share the diagnosis with family and friends

Sharing the diagnosis will be different for everyone. These suggestions can help you to think about how you want to share the diagnosis:

You may have been there when the person was diagnosed. However, it’s important to recognise the diagnosis is news for the person with dementia to share, not yours. It’s often important for the person to be in control of who they tell, how and when. Some people with dementia decide to share their diagnosis themselves. Others might ask you or someone close to them to share the news, on their behalf. Agreeing this beforehand can help you feel more in control. For example, Raj asked his oldest son to be the family spokesperson.

It’s helpful to plan what you’re going to say before sharing the diagnosis. Suggest the person write down points they wish to share. Be prepared for questions and to talk about the support you both need now and in the future. Read Managing how others treat you, and the person you support. Before their annual fishing trip, Mario told his mates “I’ve been diagnosed with Alzheimer’s. I’m fine to head out on the trip, but I’ve decided to give up my driver’s licence, just to be on the safe side. I’d really appreciate if I can be a passenger this year”.

It’s also helpful to plan where and how you’re going to share the news of the diagnosis.

Kathleen felt most comfortable inviting friends over and telling them in her own home.

Ron told his golf club committee at a meeting and then organised a fundraising dinner for dementia research. They arranged a guest speaker who explained the condition and how to support people with dementia and their carers.

Many people chose to tell people face-to-face, others by telephone. Some chose to share the news in letters or by email. One person announced her diagnosis through her annual Christmas letter.

Be prepared for assumptions and stereotypes about dementia, as well as questions. You can direct people to this website, or Alzheimer’s Society website with easy to read factsheets about dementia .

When to share the diagnosis

Finding the right time to share will be personal and depend on many things. Everyone is different. Some people tell others gradually as they see them. Some tell everyone straight away. Others choose to not tell anyone for many months.

Many people start by telling the people they feel closest to such as immediate family and close friends. These are the people you know well and trust and may help with emotional and practical support. You might also share your own feelings about supporting someone with dementia with these people. You may then decide to share the diagnosis with more casual friends or acquaintances.

Help to share the diagnosis

The ‘Circle of Friends’ worksheet can help you decide who you’re going to tell and plan what you’re going to say.

No matter when you tell others, a key message to give is that dementia does not define your lives. You are both still the same people you were yesterday.

This is a webinar from Dementia Alliance International where people with dementia share their thoughts and experiences on telling their family.

Share your diagnosis with people who will support you

Decide who you are going to share your diagnosis with. The Circle of Friends worksheet can help decide who you’re going to tell about your diagnosis and how to tell them.

Share the diagnosis with professionals

Its important for healthcare professionals such as the dentist, optician, pharmacist or hospital staff to know if a person has dementia. Healthcare professionals rely on an accurate medical history to deliver the best services and care. If they know about the dementia diagnosis, they can adapt the service they provide or make allowances to help. For example, the person with dementia could ask for a written summary of their appointment and what follow up actions are required, like arranging blood tests or x-rays. They could ask for a longer appointment or arrange to have you or another advocate accompany them to appointments.

Healthcare professionals will keep all personal information, including diagnoses, confidential. Not all health practitioners know detailed information about dementia. Carers have told us that they have found that sometimes they need to educate their healthcare professionals. See Managing how others treat you, and the person you support on being assertive when speaking with healthcare professionals about dementia.

It might also be helpful to tell other professionals who help with legal and financial planning such as your accountant or lawyer.

Tell other people in daily life you have dementia

You might also find it helpful to tell other people you meet and talk to regularly about the person’s dementia. This could be the bus driver, supermarket staff, bank staff or hairdresser. They may be able to help by sending the person reminders for appointments, helping them to make a payment or just giving them more time.

Some people with dementia prefer to wear a sunflower lanyard to let others know they have a hidden disability and may need extra time or help. Many supermarkets and banking staff have dementia awareness training that means they can help with practical things like allowing extra time with customers at the tills.

Read about Cheryl’s experience of wearing the sunflower lanyard

Sharing the diagnosis with employers

If you, or the person you support, works in a paid or voluntary employment, you will want to think about when and how to tell your or their employer. If you are thinking about giving up or changing work, this can be a traumatic decision so planning early and understanding your rights at work are important.

The person with dementia section of this website has information on how to talk with their employer. Telling others about your dementia diagnosis. This includes links to information about laws that protect people with disabilities, including dementia, at work. Human Resources personnel should be familiar with these laws and provide assistance to transition to other work or to retirement.

If you are working, there may come a time when you want to consider changing your work to enable you to provide the sort of support or care you want to give. Carers UK provide information on your rights at work as a carer and Dementia UK provide information on getting financial help and support.

There are statutory rights in the UK to protect employees who have caring responsibilities including the right to request flexible working, the right to time off for an emergency, protection from discrimination and the right to parental leave. Many UK organisations have a carer strategy to assist carers balance work and care responsibilities. Human resources staff should be able to advise you if a carer strategy is in place at your workplace, as well as your legislated entitlements. Communicating early with your employer can help you modify your existing job, hours of work or leave or extended leave and a return to work strategy. The Alzheimer’s Society shares ideas for making a flexible request to work and care.

You may also be entitled to benefits as a carer of someone living with dementia. The Alzheimer’s Society provides helpful information on how to apply for a carers allowance and how this might affect other benefits you may receive. You may also be entitled to other benefits, depending on your financial situation. You can find out more about getting a carers assessment from your local authority through the NHS website.