Published by Kate Jaggers

Categorised in Good To Know

World Alzheimer’s Day on Monday 21st September, indeed the whole of September is being dedicated to raising awareness across Suffolk. We’re doing all we can to support this and we hope hope you’ll share, like and let others know too.

Suffolk County Council alongside Dementia Together and Suffolk Dementia Forum shared their insights into what helps those living with and caring for people with dementia the most via a webinar. Throughout the webinar, they share their experiences, information and advice.

Nic Roper shares her perspective as an unpaid family carer and also as Head of Operations for Learning Disabilities & Autism and Mental Health Services, highlighting the facts around unpaid carers in Suffolk as well as the challenges she and others face.

Nic was in a very unique position, that she proudly describes as… “experiencing things from both sides of the fence.”  She works for a busy social work service at Suffolk County Council where she favours complex cases that focus on dementia patients. Little did she know that her caseload was about to include her mum.

Nic like many others, lives a busy life. She is a mother, a wife, a daughter and a friend who balances all of these alongside her work. She considers work a huge part of her busy life then she also suddenly found herself with another role, looking after her mum who was diagnosed with mixed type dementia.

People know me as Nic Roper, Head of Operations but, we all have a life outside of work. Work is a big part of your life, but the thing that happened to me, was taking on an additional role as a carer for my mum.

…To take on an additional role that you didn’t necessarily volunteer for or one that you didn’t know was coming is quite significant.

Nic wonderfully describes unpaid family carers as people, “that’s you and me”. As her professional role is centred around family carers and how her team can meet their needs, when she found herself in a caring role she began to reflect. Her personal experience is paramount in assisting others, but her work is also significant as it exposes her to the statistics around unpaid family carers.

Before Nic was a family carer, she assumed carers were exposed to a steady decline in the cared for and their environment. She shares her and her mums journey and describes it as up and down from the beginning. One of the pinnacle moments that highlighted the need for a proper assessment was prior to her mum’s diagnosis, where she suffered vivid hallucinations. The pattern that followed this consisted of really good patches and then really bad patches. Matters were complicated further, as her mum had mental capacity during this time, allowing her to make the big decisions. This combined with a good social front meant she was very convincing to health professionals and being in her company for a prolonged period of time was essential to understanding her state of mind.

Nic is very open and mentions that her role as Head of Operations for Learning Disabilities & Autism and Mental Health Services meant she thought she had it sussed, as she spent a lot of time with unpaid carers.

Going through it yourself and really living it, you get a different perspective.

She also shares all of the things she never realised could or would happen during a family carer and cared for’s journey…‘I never realised that’

  • My Mum’s journey would also be mine
  • Dementia unique to every individual and variable
  • Even in the moderate stages, lucid moments are frequent and that can be confusing in itself
  • Short term memories can still be made
  • Complex things that are embedded in the long-term memory are still do-able
  • Medication can make or break a situation
  • I would very soon be on first name terms with the Pharmacist and the neighbours
  • The system doesn’t always work together and many organisations are process-driven
  • Dementia can be a long-term condition but it will impact from day one
  • A lot of my support came from friends who have been through the same situation

Due to Nic’s role at the Suffolk County Council, she was fortunate to know the correct channels that would enable her to receive the vital support she needed, before the decision was made to place her mum into a care home.

If you or someone you know is in a similar position, Suffolk County Council have a wealth of information on their website, including their online services.

Dementia Together are a wonderful provider that are transforming dementia care and patient experiences in so many ways. They support each person as a unique individual, enabling people to take back control of their lives and live well with dementia. Their service supports not only those diagnosed with dementia at every stage of the condition, but anyone worried about the disease.

Alzheimer’s Society are another amazing charity that can assist those living with dementia and their families. Head to their website to find out all you need to know about dementia, including their expert support, advice and information. They also offer an advice line 0333 150 3456 where they offer personalised information.

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