3.19 Managing symptoms when out and about

Take steps to stay engaged in life outside home

Carers have told us that it can be easy for their person living with dementia and themselves to become socially isolated. Concern about how their person will manage getting transport, finding their way, managing money, communicating and even managing public toilets can all be disincentives to going out.

Anticipating problems is normal but if worries stop you or your person from engaging in activities outside the home, you can quickly spiral into becoming socially isolated, even depressed. One carer warned to be aware if you start avoiding activities you previously enjoyed because of “what if” questions:

• What if my person says the wrong thing?
• What if other people don’t understand?
• What if my person gets lost?

You can take steps to address these potential issues and keep up with activities, friends and family. Social contact boosts your physical and mental health!

What if they say or do the ‘wrong thing’

It is easy to worry about your person doing the ‘wrong thing’ or not coping when out. Worries include forgetting names, losing the thread of a conversation, mistaking someone for someone else or misinterpreting cues – such as who was next in line to be served. These situations, and more, will occur. The best strategy is to expect them and be prepared to cope with them.

Carers have told us that learning to accept that mistakes occur is important. Correcting the person (when not asked) can embarrass the person and may inflame a situation. Remember stress is infectious and if you get stressed your person will possibly become even more stressed and situations will quickly escalate.

Kitty found honesty is always the best policy – she or her husband Cliff will say “It’s early Alzheimer’s, it’s such a pest of a thing” when things go awry. Kitty tells us that “almost everyone has a family member who has, or has had dementia, 99% of the time they get it, and they make allowances”.

If possible, prepare for situations that you know will cause difficulty.

Shirley has been going to the same tennis group for 30 years but finds she has difficulty recognising faces. Her tennis girls were happy to wear name tags which avoided embarrassment for Shirley.

Some types of dementia, particularly frontotemporal dementia, can affect the parts of the brain that control behaviour and social awareness. This might lead to comments or actions that seem rude, overly familiar, or even provocative. These behaviours are symptoms of the condition, not a reflection of the person’s character.

Try not to react with embarrassment or anger – this can escalate the situation or make your person feel ashamed. Instead:

• Stay calm, speak gently, and redirect the conversation or activity if possible.
• If you’re in public and the comment offends someone, a brief and calm explanation such as, “I’m sorry, my partner has dementia,” usually helps people understand and de-escalates the moment. You can also consider using the “The person I am with has dementia card”
• If your person becomes agitated or argumentative, avoid debating or correcting them. Acknowledge how they feel (“I can see you’re upset”) and move to a different setting or topic to give everyone space to calm down.
• Practice a few short responses in advance so you’re prepared for tricky moments.

Over time, you’ll learn which situations tend to trigger these reactions and can plan around them. For instance, choosing quieter venues, shorter outings, or going out at times when your person is usually more relaxed.

• Rina noticed her husband sometimes stood too close to people in queues or reached out to touch their arm when talking. She now gently steps in, places a hand on his shoulder, and says, “Let’s give them a bit more space.”
• Mark found his wife would sometimes interrupt others or speak loudly, commenting on other diners in restaurants. He started choosing quieter cafés and sitting in a corner booth, which reduced distractions and helped her feel calmer.

For more information and strategies, please refer to section 3.10, Strategies to help with behaviour and personality changes.

Managing other people’s reactions

Sometimes it is not the mistake your person may make, it is other people’s reactions which are unhelpful or even hurtful. This page- 2.8 Sharing the diagnosis with family and friends goes into detail about how to tell other people of the diagnosis, but there will be many other types of interactions with people. It is up to the person with dementia who and how to tell.

Brad decided that going out and doing things he enjoys is more important than the occasional odd look or comment. For difficult situations he says, “I take a couple of deep breaths and walk away”.

Consider talking to your person about having a buddy or buddies. A buddy could be a friend who they normally do things with, who understands dementia and has the confidence to gently step in if required. Buddies can also be paid carers who assist with social and other outings.

Some people, even those you may have considered long-term friends do not cope with the diagnosis. Most carers have told us that while some friends stay, others fall away. If you know this is the case it may be easier to cope with.

Other carers have found that they make new friends, especially within dementia friendly groups. In these groups no explanations are needed and there are staff who understand dementia. They have adjusted to better support the participation of people with dementia. Dementia friendly groups are part of the Dementia Friendly Communities movement. This movement is raising awareness of dementia and working to make communities more inclusive and welcoming.

Concerns about becoming lost

Navigation, especially in new locations can be very challenging for people with dementia. There are ways to help.

• If your person owns a smartphone there is navigational help for walking and driving. Practise giving voice activated commands. For example, on iphone, the verbal command “Hey Siri, navigate to my parked car/shop/particular address” will show directions via a map on the screen.
• Use the smartphone to take a photo of where you parked the car, the bus stop or the entrance you used to get into a shopping mall.
• Dogs can be helpful! Ken found navigating about his new retirement village difficult. He enjoyed a walk but hated always asking his wife to go with him. Ken found walking the neighbour’s dog just before the dog’s dinnertime was a reliable way to get home by a particular time.
• Make sure there are contact details of a couple of family members and/or friends in the person’s wallet or purse.
• Show a I have dementia card when asking for assistance; it can avoid giving long explanations.
• Practise getting to and from frequently visited places.
• Be your person’s trip buddy or ask someone to be your person’s trip buddy.

Photo: Charles Puaud via Unsplash.