Dementia Action Week | Suzanne, Customer Engagement Specialist, shares her story

This week marks Dementia Action Week (17 – 23 May 2021) – a national event led by Alzheimer’s Society which sees the public come together to improve the lives of people affected by dementia.

Throughout the week, we’re hosting conversations with the people who face dementia every day, as they share their experiences with us.

Today we talk to Suzanne, Customer Engagement Specialist, who works with customers here at Onward, empowering them to share their voice and help us make change for the better.

18 months ago, her partners mum, Mary, was diagnosed with dementia and Suzanne has been there for support ever since. This is the first time Suzanne has ever experienced helping someone with the illness, and we sit down to ask her about it.

What are the most challenging things about supporting someone with dementia?

There have been various little challenges along the way, seeing Mary change was the first.

Mary has been a very active and involved mum of two boys and nanna to three grandchildren. She is still a very independent women living at home and manages self-care and light cooking and cleaning – the routines she has always done. But money management, shopping, evening meals and travelling all require assistance.

Before, Mary would often jump on the bus anywhere, even out of town. She would take her shopping trolley and be out all day, knowing exactly which shop had the best bargains.

Lockdown has restricted a lot of her outdoor and social activity. That lack of regular social routine has seen a sharp decline in her confidence, memory and mood.

We want Mary to live as independent and as well as possible for as long as she can. We do worry about the unknown and the unpredictability. We don’t know how long her personal independence will continue – no two days seem to be the same. Sometimes she is very happy and content but at other times is quite agitated.

Phone calls can be tough – we can get between 20 and 40 calls some days. Often repeat calls that have been forgotten about from the short-term memory, or because Mary is lonely or bored.

One very useful call we do get however is on a Thursday when she reminds us it’s her magazine day. She loves Take A Break and really looks forward to getting it!

I suppose the final thing is time. When your life is full of work and family commitments, you can begin to feel a bit frazzled.

What changes can people make to help others live better with dementia?

I can only speak about Mary, but what really seems to help is if she feels loved, safe and secure.

Regular daily contact with us, (we are lucky we live close by) little treats like chocolate or nice biscuits, magazines, or new items of clothing that she needs.

At teatime she has a home cooked meal and we encourage the routine of getting her PJs on to settle for the night.

Keeping the information about appointments or visitors to a minimum so she doesn’t need to keep asking for reminders and getting anxious.

Starting conversations about her life, the solid memories she can wax lyrical and feel happy about. Laughter has really taken the sting out of some difficult situations. Mary did not accept a diagnosis of dementia very well at all. She would often make us swear that we wouldn’t tell anyone, so keeping things light and funny helped her ease into the changes she was experiencing.

When we help her to clean up, we don’t move anything to a new place. This way Marys longer term memory can help her find things more easily.

Finding the right support at the right time. We have been very lucky and have an amazing lady, Caroline, who comes for an hour in the weekday evenings to make sure that Mary is still settled and heading towards bedtime. 

What can Onward do to become even more dementia friendly?

Reach out to customers, or their family and friends, to gather information on which customers might be living with dementia. This would help contact centre colleagues be aware of additional support they might need, such as booking appointments, reminders and repeat calling, appointment times etc. (Mary likes a lie in these days and can be quite put out for the whole day if you wake her too early!)

Make the subject of dementia ok, just like this. We can talk about it, share more experiences and share support services available. Be open and encourage honest conversations to raise awareness and improve our services.

What advice would you give to someone who thinks they, or a relative, may have early onset dementia or memory problems?

Don’t panic, you can still live well with dementia. The earlier it is identified the quicker support can be put in place, ie. medication, stimulation, buddies.

Mary has just been given some free two-hour-long home visits each week from an organisation called Crossroads. This has given her a real boost and we can really see the difference it makes to her on those days.

Contact organisations like Dementia Friends or Dementia UK – they have lots of local and national information and support.

Accept that it’s a new situation. To live with, or care for, a person with dementia is going to require you do things a little differently and you will need help so just ask.

Try to take each day as it comes and find things to smile and laugh about!

If you have been affected by dementia and need support, please call the Dementia Connect support line on 0333 150 3456 to speak with an expert adviser.

Alternatively, get involved on social media and join the conversation. Use #DementiaActionWeek #CureTheCareSystem and don’t forget to tag us!