3.5 Managing with difficulties when out

Doing things outside the home is important for many people with dementia.

Doing things outside the home

Seeing other people and doing activities outside the home gives their life meaning. Read articles Boost your physical health and Boost your brain health to find out how keeping social can also boost your health.

However, dementia can make it more difficult to get out of the house and do things. You may find it more difficult to talk to other people and feel less confident meeting other people. You can download our card which you can show to people to help them understand you have dementia.

We suggest some practical hints to help you stay connected with others and keep getting out and about.

Practical strategies to help you keep going out and talking to other people

Find out how other people with dementia have managed to deal with issues they have faced.

Problem: I keep getting lost – outside and inside

Suggested strategies:

When you go to a new place and you think you might get lost, prepare by getting a map or floorplan and planning the route beforehand. You can often find these in big shopping centres and hospitals.

If you are going into a big shopping centre, take a photo with your phone of the entrance where you entered so you can find your way out.

If you are driving, take a photo of where you parked your car.

Ask friends or family you are with to take the lead on navigation.

Ask others for directions if you are unsure.

Make sure you carry your personal details (address and key contact numbers) in your wallet or handbag.

If you have a smart phone, download a map app like Google Maps and practise using it to navigate. Try the “live view” instructions which use your camera to point the way you need to walk.

If you have a smart phone, set up a taxi App like Uber or a local company and programme it with your home address. If you get lost, the App can use your phone to find your location, call a driver to that location and instruct the driver to take you home.

It can be difficult to work out the pictures used on the signs for ‘men’s’ and ‘women’s’ toilets. It may be helpful to practice recognising the ‘wheelchair’ sign and use the disabled toilets which are unisex and have room for another person to assist if required. You can purchase a ‘Radar’ key from Disability Rights UK which gives you independent access to over 9000 accessible toilets in the UK including those in bus and rail stations, pubs, restaurants, shopping centres, amongst others.

Another useful hint is to use the National Public Toilet Map which can help confidence in not being caught short when out and about. National Public Toilet Map.

Problems and strategies

Problem: I lose track during conversations

Suggested strategies:

If possible, plan appointments or larger social events when you are at your best, such as in the morning. If this is not possible, try to make sure you are well rested before and during the day of the event.

For important conversations such as doctors’ appointments, or phone calls, prepare a list of questions for things you want to talk about. Write notes or ask if you can record important conversations on your phone so you can listen to them later.

If you’re in a place where several conversations are happening, focus on one conversation. If you can, move to a quieter area, a bit further way from the other people, so it’s easier to focus.

You might find going out in smaller groups is easier (up to six people). Meeting one person at a time is better for some people. If you are out in a large group focus on one or two people at a time.

If you lose track part way through, ask the other person to repeat themselves.

If you need a break, take a break. Go to a quieter area or walk elsewhere to have a rest from the conversation.

If you feel comfortable, explain you have dementia and sometimes lose track, but you are interested in what the person is saying.

Problems with hearing and sight can also make following a conversation more difficult. Have a check list for when you leave the house to remind you to take any glasses and hearing aids and batteries with you. Have regular sight and hearing tests.

Problem: I worry I might make a mistake when out

Suggested strategies:

Spend time with people you feel comfortable with and who will understand if you do make a mistake.

Ask someone to act as your ‘buddy’ when out. Ask them to support you and help you if they think you are going to make a mistake.

Accept that you may make mistakes, but most people won’t think much of these anyway. Going out to do something you enjoy outweighs the small risk of doing something embarrassing when out.

You might choose to let people know you have dementia. Some people wear a sunflower lanyard to let people know they have a hidden disability and might need extra time or support. Find out more about letting people know you have dementia.

Problem: I can’t remember people’s names

Suggested strategies:

Ask someone you often attend social activities with to remind you of people’s names.

Ask the person whose name you’ve forgotten to remind you of what their name is. “I know who you are, and I’m really sorry but I’ve forgotten your name. Can you please remind me?”

Healthcare professionals often wear a badge with their name and photo on. Ask to see their badge to remind you.

Refresh your memory of people’s names and faces before going to an event. You could simply make a list if you know who will be there or put together a printout or a small photo album with photos and the names of people you see regularly. You can look through these before going out.

If you use social media (such as Facebook) you can use this as a reminder of faces and names. Similarly, messaging apps such as WhatsApp often include a picture of the person. Browse your contact lists before going to an event.

Problem: I have trouble finding the right words

Suggested strategies:

If there are words you regularly forget, practise saying these or write them down. It could be items, people, places or other things you have trouble remembering. Keep a list and you can check it when you are struggling.

If you can’t find the right word, describe the word instead. The person you are talking to might be able to fill in the word. This way the conversation flow can continue.

Problem: I get more frustrated or upset in unexpected or stressful situations (such as delays or people being rude or unhelpful)

Suggested strategies:

When you feel yourself getting frustrated or upset, take a deep breath, try to stay calm. Walk away if you need to.

Tell your friends and family beforehand how you like to be helped in unexpected situations. For example you would like them to remind you to stay calm and help you respond, but you don’t want them to take over.

Ask a trusted friend or family member beforehand to step in if the unexpected happens and respond to the situation.

Dementia friendly groups

Dementia friendly groups have staff who understand dementia. These groups support people with dementia to take part. Dementia friendly groups might be part of the Dementia Friends initiative which helps raise awareness about dementia and making communities and businesses such as supermarkets and cinemas more inclusive and welcoming.

Some people with dementia prefer to attend dementia friendly groups or activities, where people will be more understanding of their symptoms. You can find local dementia friendly groups by searching here:

Alzheimer’s Society

Age UK

Dementia Action Alliance

Speech and Language Therapy, Occupational Therapy and dementia

Speech therapy and occupational therapy can help people to take part in everyday conversations and do daily activities more easily. This can help you to stay independent and keep doing the things you want to do.

Speech and language therapy

Speech therapy is delivered by trained healthcare professionals called speech and language therapists (SALT). Speech therapy can help with issues with talking (such as pronunciation), and other ways of expressing yourself, and understanding others. Speech therapists can help with word-finding difficulties, when you have trouble telling a story, or following a conversation. They sometimes work with your family and friends to improve two-way communication.

Speech and language therapy also offer support with other issues such as swallowing food.

There is growing research on the benefits of speech therapy to improve the communication of people with dementia.

This blog explains how a speech and language therapist could support you.

Ask your doctor for a referral to a speech and language therapist if you need support with communication. Read here to find out how to get a referral.

Occupational therapy

Occupational therapists are trained professionals to help you manage everyday activities. For example, they might help you to do things in the home safely, such as checking for trip hazards, provide help if you are worried about leaving the cooker on. They can provide adaptations and equipment, such as with getting in and out of a high bath. They can help with practical support, such as helping you to use your smartphone for navigation using a map app, or who to call to keep track of your appointments.

Research studies consistently show that occupational therapy helps people with dementia keep doing things that are important to them and delays the need to go into care.

Learn more about how occupational therapists may be able to help you.

Ask your doctor for a referral to occupational therapy if you need support with your daily tasks and activities. Read here to find out how to get a referral.

Take action

Ask your doctor

Talk to your doctor about getting speech therapy or occupational therapy.

Try some strategies

Reread the article and write down some strategies that you think might be helpful to you when you are out. Then try them out.

Download and print our dementia card

You can use our card when you are out and about to encourage people to understand why you may need extra support and understanding.

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