Tips for having difficult conversations about dementia this Christmas - from someone who's made 3 decades' worth of mistakes.

A colleague, @David Nolan wrote a very profound post today about his father with dementia- lamenting the loss of his father's memory and of never asking the questions he wanted to ask him. We are approaching Christmas and our thoughts start to revolve around family. So for those who may want to talk with a loved one before it is too late, I've jotted down a few tips. I’m not an expert in dementia, so please go to Dementia Australia to get information and professionals in this area. But I’ve been talking to people with dementia as a physio/doctor for too many decades, learned from experts and had Christmas conversations go wrong enough times to want to share the following points with you:

1)   This conversation is likely to be far more difficult and scary for your loved one than for you. So you need to be the peacemaker, the one who is listening for all the cues, and not the one who will judge, tut-tut, or react to the myriad of unconscious triggers that rear their ugly head in family conversations. Or does that only happen in my family?

2)    Talking with people who are at risk of developing, or have developed dementia, in order to find out their history is very helpful, not only for yourself but for any current or future carers. Watch this video with a seasoned aged care/dementia nurse manager to understand why.

 3)    Remember that the person might already be suspecting they are "losing it" and be very worried about losing their home and/or independence if anyone finds out. As a parent, hanging onto their position as a parent to a child (and not a child to their child) might be extremely important for their self respect. So they often mask or deny it. At this early stage they often have anxiety and fear, and can be quick to anger. Their anger will often take the form of the exact things that trigger you, from way back in your childhood days. So be on the lookout and don't react. Go gently! Or have a 3rd person in the room with you to defuse.

4)    It helps if you approach these conversations exposing a little of your own fears and anxieties, rather than making it about them. "Mum, Dad, we have never really talked about.....your childhood home/ your piano playing days/ your old neighbourhood and I was thinking about how little I know about it..can you tell me more?

5)    Remember that we all have fears and insecurities, and it is those fears and insecurities that allow us to have vulnerable, tender and gentle conversations. This is not a time to be the super confident 'know it all' which will only make your frail, elderly, scared parent or spouse feel even less confident. “I’m a little scared about asking this because I don’t know the right words to use” is okay to say.  No-one knows the right words to say.  And if you say the wrong ones- apologise straight away. Stop, try again another day.

6)    Questions about their more distant past will be easier for them to answer, and may remove some of their fear of talking. They can often be suspicious- "Why are you asking that?" so open up the conversation out of a 'wanting to know more about your history" kind of way. Don't make it about their health.

7)    Plan for more frequent, shorter conversations rather than all at once. If you can end a conversation with “Thanks- it was fascinating to find out those things I never knew about you. Can we talk again? What biscuits should I bring next time?” will help to have another conversation.

8)    It is really important that they do not associate talking to you with being 'put on the spot’ or feeling uncomfortable. Add food that brings pleasure, talk in the car while driving around familiar areas, play lovely music softly in the background, have baking smells, bring favourite flowers, smile don't frown, and have any chats when you have time to sit and be silent and not rush. Always make tea, if that’s their preferred drink. Bourbon if necessary, for you.

9) Ask yourself why you are asking questions- if it is merely for your own interest and causes them anxiety- do you really need to know?

10)   Make sure they have their hearing aid in and turned on. And it works.  Asking “How’s your hearing aids?” might be a less threatening (and quite useful) way to start the conversation. I cannot tell you how many well meaning doctors gave whole explanations of their care to patients without ever stopping to check they had their hearing aids in. And people are very, very good at nodding and saying ‘Yes, doctor, I understand. Very good. Thank you, doctor.’ Not being able to hear well is just one more cause for fear and anxiety. Refer back to point 1.

11) Always try to end a conversation before you need to. Don’t risk them getting agitated and cutting the convo short, finishing on a bad note.

12) When your loved one has already developed a degree of dementia, visual cues can help. Try opening a photograph album. The older the better. They will be able to remember the older photos more easily, and therefore less confusion and fear when talking with you.

13) Be careful bringing recent photos to discuss. They may not recognise themself or others ( ie they may as well be looking at strangers) and that can be very frightening. It can go like this: Who is this person? Why are you showing them to me? What do they want? I'm not going to give them anything. I don't trust you.

14) Similarly, mirrors can be frightening. They may not recognise that old person and may think there is a stranger in their own home. Cue- behaviour disturbances.

 15) Memory boxes help- filled with memorabilia that can prompt a conversation. If your loved one did not make one, perhaps you can put a few things in a box and take it to them as a gift and see what memories it brings up. Music of course is a big part of this but pieces of material, old favourite Christmas baubles, Eucalypts if they loved the bush -smells , vases or special ornaments, favorite books – read from them, or let them hold and touch them, feel the weight... the list is yours to create.

16) Speech pathologists are very good at helping people communicate even when words are not working. Find your nearest one and ask for help.

17) Even if your loved one does not recognise you, still talk to them and be there with them. They will recognise the feeling they get from you , even if they do not recognise you exactly. Watch this video and remember it

Good luck. Be brave. Be vulnerable.

Merran