Grace’s Nanna Daphne was diagnosed with Alzheimer’s and vascular dementia in 2017. Grace and her family’s experience inspired her to support other people by working for Alzheimer’s Society as a Telephone Dementia Adviser.
‘When my Nanna was diagnosed, we didn’t know about Alzheimer’s Society.
'My family had to navigate what has been a very bumpy journey on our own. Knowing about Alzheimer’s Society from the start would have made a massive difference.
Enjoying Christmas as a family
‘I have a November birthday so Christmas for me doesn’t start until after my birthday - but I do love Christmas, especially the build-up.
'I come from a big family so it’s always been one of those rare opportunities where we can get a lot of us together and it’s just a really lovely time to be with people that you love.
‘When we were growing up my Nanna lived over three hours away and she’d come and stay for Christmas. I remember being very excited for her to arrive.
'My Nanna loved dancing – at Christmas time she’d always have music on and be dancing – even if none of us were dancing with her!
'She loved singing too – so any opportunity for carols, she’d be there. She was such a performer and loved being there with everyone. She used to really spoil us all at Christmas.
‘Now, with her dementia, she doesn’t have an awareness that it’s Christmas, so things are very different. Nanna’s dementia means she struggles with coordination, so things like opening presents are challenging - and she struggles to communicate verbally which means we can’t chat or sing like we used to.
Christmas with Nanna has changed since her diagnosis
'Our family dynamic has completely changed - now we all care for someone who cared for us all our lives.
‘We have to be careful not to overwhelm or agitate Nanna with hustle and bustle so Christmas now is much quieter; playing her favourite Christmas songs in the background and lots of hugs.
'I like to write Christmas cards from my Nanna to my family, particularly my mum, to thank her for the love and care she shows Nanna. It’s a small gesture I know, but one that would be so important to her.
It’s obviously not the same anymore, but Christmas is a chance to remember what Nanna used to be like – and celebrate those happy memories. I am so grateful that my Nanna is still around and still our Dancing Queen.
Becoming a Dementia Advisor
Grace has been working on Alzheimer’s Society’s Dementia Support Line for over a year, providing expert advice and emotional support to those in need. She was on the phone lines last Christmas.
‘Being a Dementia Adviser and having a personal connection can sometimes be difficult but I’m lucky to have a supportive team around me, and the calls where I’ve really made a difference help keep me going.
Empathy and compassion are such important qualities in a telephone adviser, and my personal experience does help me understand better what people are going through.
‘I have some people who regularly ring up, and it’s so lovely to see the impact my support and advice can have. We get lovely feedback telling us how the information we’ve provided has made a difference.
'Someone rang me back the other day. They told me that the information I’d provided had led to their friend getting the right support at the end of their life – so the end was more comfortable. That was lovely to hear.'
Spending Christmas on the Support Line
Christmas is the most important time for the Support Line. Over Christmas, we tend to get more calls from people in crisis. People don’t know what to do or where to turn.
'One call I had was from a gentleman whose wife was experiencing delirium and wouldn’t come inside out of the freezing cold. It was Boxing Day, and they were on their own.
'Although we aren’t an emergency crisis line - fortunately, I was able to signpost him to further help. It was a reminder that dementia doesn’t take Christmas off.
‘Then we have people who ring for some much needed comfort over the Christmas period. Sometimes they haven’t spoken to someone for weeks – so it's important to be there so they’re not dealing with their distress alone, without any support.
'People are often more distressed at Christmas - because they want it to be a happy time, but it isn’t. I’d hate to think of people sitting there and feeling alone – that’s why it’s crucial that we’re there.
'I always tell people they can call as many times as they like if it helps them get through Christmas.
Directly after Christmas we always see a spike in calls – usually from concerned family and friends who have noticed changes in their loved one’s memory or mental health.
'The phones can be ringing constantly – I’ll finish one call and jump straight into another one. I dread to think what would happen to some people if the Support Line wasn’t there.’