3.10 Strategies from others for when you are out and about

It can be easy to let dementia get in the way of getting out and about but staying social is good for our cognitive and mental health. Below, people living with dementia share some of the issues they face when out and about and tips about making things easier.

I keep getting lost, including inside buildings

• If you’re going to a new place where you think you might get lost, prepare by getting a map or floorplan and planning the route beforehand.
• 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 still 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 phone 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 while walking or driving. Try the “live view” instructions which uses your camera to point the way you need to walk.
• If you have a smart phone, set up a ‘ride share’ App like Uber and program 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 that driver will take you home.
• If you are learning your way around a new place you will use regularly, get a friend or family member to go with you for a while. Practice taking a consistent route and learn landmarks along the way.
• Consider wearing a tracking advice that provides information to a family member, friend or monitoring service, who can support you if you are lost or worried. This is available through smart watches, or a self-contained tracking pendant/watch that works independently of a mobile phone.

I lose track during conversations

• Where possible, plan appointments or social events when you are at your best (people with dementia tell us that is often in the morning). If mornings aren’t possible, make sure that you are well rested on the day of the event.
• For important conversations (e.g. medical appointments, or phone calls to make arrangements) take a written list of questions.
• Maria asks her specialist if she can record important conversations on her phone so she can listen to them later. Stephan takes a pad and writes notes to refer to later or share with family. (Alternately, you can ask the person/health professional you are meeting with to provide you a written summary.)
• If you’re in a place where several conversations are happening, focus all of your attention on one conversation. If needed, move the conversation a bit further way from the other people so it’s easier to focus. Don’t feel shy about asking; “Can we move to somewhere a bit quieter?”.
• Socialise in small groups (e.g. up to six people). One-to-one works better for some people.
• Ed loses track of conversations part way through. He either asks the other person to repeat themselves or he says, say, “Hey mate, I have dementia, that was interesting, but can you summarise it for me please?”
• Anna tells us if she is not following a conversation, and doesn’t think it is important to remember, she just nods and smiles!
• Ari says “sometimes I just need a break. I either excuse myself and go to the toilet or find somewhere quiet to sit”.

I worry I might make a mistake when out

• Try reminding yourself that everyone makes mistakes at times – not just people living with dementia.
• Spend time with people you feel comfortable with and who won’t make you feel bad 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 might make mistakes, but know that most people won’t think much of these anyway. (They may not even notice.)
• Decide that going out to do things you enjoy outweighs the small risk of doing something embarrassing when out.

I can’t remember people’s names

• Refresh your memory of people’s faces and names before going to an event. For example, put together a printout or a small photo album with photos and the names of those you see regularly – you can look through these before going out. Even a list of names is helpful if you don’t have photos.
• If you use social media (e.g. 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.
• Ask a person you often attend social activities with to remind you of people’s names. Barry’s wife always made a point of greeting people by name and using their name in conversation. This meant Barry was able to get their name without asking them.
• Anna says, “I simply ask the person I’ve forgotten to remind me what their name is.” I say, “I know who you are, and I’m really sorry but I’ve forgotten your name. Can you please remind me?”

I have trouble finding the right words

• Practise saying the names of items, events and people you have trouble remembering. You may keep a list of words that you commonly forget, and practise those.
• If during a conversation you can’t find the right word, talk around the meaning of the word. The person you are talking to might be able to fill in the word, and this way the conversation flow can continue.

I get frustrated or upset in unexpected situations

• Ed says “I have had to teach myself to be more aware when this is happening. I take a couple of slow, deep breaths to try to stay calm. If I need to, I will walk away.”
• Beforehand, tell your friends and family that if the unexpected happens, you want them to prompt you to stay calm and help you find the right response, but that you don’t want them to take over.
• Beforehand, ask a trusted friend or family member to step in if the unexpected happens and respond to the situation.

Consider using the “I have dementia card”

If you are out in public, you may need to let other people (for example the bus driver, cafe staff or receptionist) know that you have dementia.

You could simply tell them and state the sort of support you need, but some people find carrying an assistance card helpful. This is especially the case if you need more time to manage a situation, such as:

• handing over the correct amount of money
• organising follow-up appointments
• identifying a bus stop

The card discretely alerts people that you may require their help and support. You can make your own card or download and print the I have dementia card.

Barry said, “I was reluctant to use the ‘I have dementia card at first’. I found out pretty quickly that almost everyone I showed it to was helpful. A lot of them said they had a person in their family with dementia. Just about everyone was very courteous.”