3.12 Dealing with 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 and themselves to become socially isolated. Concern about how their person will manage getting transport, finding the 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 the “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.

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. 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 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.