Dementia Action Week | A Scheme Manager on the front line

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 people on the front line, who deal with dementia every day, as they share their experiences with us.

Today we talk to Stephanie, our scheme manager at Meadow Court in Croxteth where we offer specialist care and support to customers living with dementia and other diseases. At the scheme, we’re able to help customers maintain their independence and improve their quality of life.

In conversation with Stephanie..

What is your experience of dementia?

My experience of dementia is both rewarding but very difficult.

I have experienced the impact it has on not only the person diagnosed, but on family members and people close to them. I have witnessed family members take on different responsibilities which has been very difficult.

For me personally it’s about having a person-centred approach. Gaining as much knowledge as we can about the persons needs and preferences. Realising someone with dementia should not be expected to follow instructions. It’s about having a gentle approach – communicating in a way they can understand and feel involved.

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

The most challenging experience I have faced was when a person suffering with dementia was seeing things that were not there. Of course, it is as real to them as our reality is to us. Some of the time they see things or remember things that cause them to be upset and unsettled. It’s difficult to try and reassure them as you’re not experiencing what they are. Telling them the truth or lying to them can cause distress. The only thing you can do is respond to their feelings and address their needs at that time.

There also can come a point when the person does not want to be helped. They do not understand what is happening to them and why you are there. They do not understand that you are trying to help. At this point you need to take a step back and give them their space. Never rush them.

You must think about simple communication. Speaking clearly, using short sentences, holding good eye contact and allowing them time to respond.

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

It would certainly be beneficial for people to learn and understand about dementia.

Introducing a routine can help people with dementia to face the day with a sense of peace and security which, in turn, can help lesson agitation and behaviour.

Playing music. This can elicit emotions and memories and help provide a link to their past. I have witnessed this first-hand on several occasions and its lovely to see their face light up.

Recently, I collaborated with our Wellbeing Team to arrange a 12 week singing course hosted by the Brain Charity. This went really well. A few of our customers with different stages of dementia were able to join in with their family members. I witnessed them interacting during the session, from just a simple smile when a particular song came on to singing along with the songs.

The feedback from one customers’ daughter was touching. Her mum is at end stage dementia. She is unable to communicate. During one of our sessions the customer woke up from her sleep, gave a huge smile and started tapping her foot. This was something her daughter hadn’t seen her mum do for a really long time, so she was absolutely delighted and it was really emotional to witness.

What can Onward do to become even more dementia friendly?

We have a room at Meadow Court which we could decorate with dementia friendly colours. We’d like to host different activities and place difference objects in there. This could be a place for customers to go to reminisce. They could also use the room with family and friends.

It would be great for someone to come and talk to colleagues about dementia – the impact it has, not only on the person living with it, but also their family, friends and carers. I feel it would also be beneficial for our customers to have insight into dementia as their neighbours and other tenants within the scheme may be suffering and it could help them to understand the disease.

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

Go and see the GP and have someone with you for support. If they have a care package, request social worker involvement. Make a point of learning the early signs of dementia. An early diagnosis can help people with dementia plan better for the future. There is also medication that could be available to slow the progression of the disease.

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!