How to access a specialist dementia nurse.

As featured in i news Saturday May 12th 2023  

https://inews.co.uk/news/health/specialist-dementia-alzheimers-nurses-charity-warning-2334954 Hilda Hayo.

https://inews.co.uk/news/health/mum-diagnosed-dementia-care-home-support-2335027 Penny Bell

Current forecasts indicate one in three of us born in UK will develop dementia in their lifetime – and the lack of investment in social care means many families affected by dementia often don’t receive adequate support and don’t know where to turn to.

The head of Dementia UK is appealing for urgent investment from the government as they need to more than double the current number of Admiral nurses from 432 to over 1000 by 2030. Admiral nurses are specialists in dementia and support both the helpline and work in partnership with the NHS, giving free advice to families when someone receives a dementia diagnosis, and who continue to provide support as the dementia progresses.

 Penny Bell A Volunteer Ambassador for Dementia UK shares her insights on the diagnosis of mixed dementia her Mum received in 2016.

We often spend time together with old photo albums.

 “After Mum received her diagnosis in 2016 and was prescribed Donepezil, there was no further support offered by the GP. We were left to manage on our own. I’m sure I could have gone back to the GP if there was a significant change in her condition physically but there was no practical advice, not even a leaflet. I had to resort to Google.

There were no Admiral nurses in our area and not much in the way of local council support. It made me feel very alone, and as though we must be the only ones going through it. I used websites like Dementia UK and The Alzheimer’s Society, but it felt like it was down to me to make things work. I started the Discovering Dementia Podcast https://www.discoveringdementia.co.uk/ to share what I found in the hope that it would help others in similar situations.

My goal, and Mum’s, was always for her to live at home and be independent for as long as possible, but it did become increasingly hard, a rollercoaster ride. I had to take over the finances and the running of the house. I had a job and three teenage daughters at home who also needed me, and I did feel quite torn trying to keep everyone and everything on track. Mum’s needs increased eventually to her requiring 24-hour care. I had to find carers to help me. We had to juggle the pandemic together. I began to feel that dementia had taken over my life too, with calls at any time of the day or night and visits to provide care when carers were not there. I had to be prepared to go to her at the drop of a hat. I had the support of my husband and girls, but it was a very upsetting and stressful time when we reached this point.

I didn’t know about the helpline at first, so it was quite a while into Mum’s diagnosis that I rang for the first time. She had begun experiencing extreme behaviours in the evenings, increasingly angry and frustrated, and I didn’t know how to handle it. Even though I was unsure whether this was the kind of thing the helpline was for, I reached the point where I thought I had nothing to lose by calling. The Admiral nurse explained about sundowning – a change in behaviour that can occur in the evening, around dusk - and gave me some pointers on how to redirect things before they reached boiling point. That was so helpful and gave me a lot of confidence. So, another time I didn’t hesitate to call about a change in medication that the GP had advised, and I wasn’t sure about it. It was so useful to get that independent ear on something and expert advice at the time it was needed. But the most critical time for me was when we reached a crisis over caring for mum at home and I knew I needed to start thinking about a care home. It felt like I was letting mum down by moving her, it was so emotional, and I couldn’t decide what to do for the best. The Admiral nurses never once minded me sobbing down the line. They advised me to try out respite care to see how that felt, then how to find a home and what to look for when I went to see one. It was a difficult journey. At one point, when I felt a particular home wasn’t working for us, the nurse gave me the confidence to give another home a try. The relief I felt when she acknowledged my feelings and confirmed it was ok to make a change was remarkable, overwhelming really.

Their support has been invaluable, and it has made these last years more bearable for me – and consequently for my family. However, many families may not be aware of the role of Admiral Nurses and how to access the helpline.

The Dementia Helpline number is 0800 888 6678.