Worrying about the impact of someone’s dementia symptoms on a social event

We asked members of Talking Point for their advice to a person facing the fact that someone is now at the end of their life.

Talking Point is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.

Sue741215 says,

‘Be open with those people you know who are going to the event so that they can help to deflect or explain any unusual behaviour to others. 

‘Be aware that most people know someone who has dementia and are understanding so it is best to tell people the reason as soon as possible if odd behaviour occurs. 

‘Enjoy yourself – and if you find you are not enjoying an event you have a good excuse to leave early.’ 

MaNaAk says,

‘As Dad’s Alzheimer’s became more advanced and he had appointments or events looming I would leave mentioning these until the last minute and then get him ready and say that a taxi is coming. I used to turn appointments into an outing and take him for coffee as well.’ 

Bunpoots says,

‘I found that my dad was OK with most family-oriented events for about three hours, so I’d just keep things short and sweet. 

‘An all-day Christmas, for example, was too much so someone would bring him to mine for lunch and drive him home when he’d had enough. This worked well as he lived close by. 

‘I also made sure no one sat in his seat…’ 

Wiss says,

‘I would suggest being open and honest with friends and relatives about dementia, discuss what might happen. It is always very difficult to cover every angle as you will not know how they will definitely react. 

‘Keep calm and don’t make them feel as though they have done anything wrong, accept it and move on.

‘I know how difficult this can be as my dad used to spit out his food in restaurants, however they are not reacting in this way on purpose. It’s really important to include them as much as possible though.’

1955omagh says,

‘I always make sure that people we will be socialising with are aware that my husband has dementia. I don’t make a big announcement or anything, just bring it into the conversation. The comment that he is looking well is a great door opener to explain.

‘I have before now spoken to the staff before the event to find out what we can do to make it an enjoyable outing for both of us. 

‘Don’t stay too long. Hubby gets tired and uncomfortable so plan to leave before the event ends. 

‘My husband can still feed himself but there are spills but I don’t want to take away this bit of independence, so we have very nice napkin style bibs in many different colours to match his outfit. I also have wet wipes to have a quick tidy up and even lift any food on the floor. 

‘I bring his own cutlery and mug. Both are items he is used too and can manage quite well. I have a large resealable bag and everything goes in there to go home. 

‘Always have a complete change of clothes and wipes in the bag on the back of his wheelchair, just in case. 

‘You can have a great time out, but you need to plan for as much as you can.’ 

Marie-Claude says,

‘My husband had Parkinson’s and related dementia. Initially, I was embarrassed and tried to hide the condition, while dealing with all his care on my own. 

‘Eventually, I realised I would have to explain the situation to some people who otherwise would not credit him with the kindness and intelligence that he still had.

‘After all, it was harder work for him than for me. 

‘I tried to explain in simple terms to shopkeepers, cafe personnel, and friends and family what they might, and need not, expect. People were more understanding than I’d anticipated.’