Dementia can have a major impact on the lives of families and carers. This Dementia Awareness Week, Sharron Tolman, Admiral Nurse at St Cuthbert’s Hospice in Durham City, takes a closer look at the complex feelings the condition evokes and reassures families they are not alone

BILLY Wilson smiles as he gently takes the hand of his beloved wife of 49 years, Rosa. “Have you got a smile for me this morning,” he asks as looks into her big blue eyes.

Rosa has been unable to talk for two years, but Billy can tell what she is thinking from her eyes. “I’ve had to learn to communicate with her in a different way,” he says. “She can’t tell me when she is scared or in pain anymore but I can see it in her eyes and I can help her.”

Rosa, 68, was diagnosed with frontotemporal dementia in 2012. She has been bedbound for 15 months and Billy is devoted to caring for her in their home in Meadowfield, near Durham City. He has never taken more than a few hours respite for himself, stating simply: “I promised my Rosa I would never leave her.”

This week is Dementia Awareness Week, a national campaign that encourages people who are concerned about dementia to seek information and support.

Dementia is a word used to describe a set of symptoms, which may include memory loss, cognitive problems, language difficulties and changes in mood and behaviour. These symptoms are often mild at first but can severely affect daily life as the condition progresses.

The impact on families and relationships can also be colossal. The rocky road of dementia can trigger a rollercoaster of emotions for carers, ranging from grief and anger to confusion and loneliness.

Mental and physical exhaustion, depression and insomnia are also common, while financial worries, embarrassment and difficulty navigating the health and social care system can add to feelings of anxiety.

However, help is available. In a week when dementia is very much at the fore, I would like to reassure dementia carers that they are not alone. As an Admiral Nurse, supported by Dementia UK, my role is to help families face dementia and equip them with the skills they need to cope and live well. I am based at St Cuthbert’s Hospice in Durham City, the first hospice in the country to employ an Admiral Nurse.

The care I provide is tailored to the individual because carers, just like people living with dementia, are affected differently and develop their own methods of coping.

Many carers feel isolated and appreciate the opportunity to reflect on their own needs. It might be the first time they have voiced their concerns to anyone and it is a great relief for them to know someone is there for them.

Some carers may not know how to access help and may just need pointing in the right direction. Others may want to know more about dementia and why their loved one is behaving in a certain way.

Dementia is still commonly associated with memory loss but in reality it is much more than this. It can cause people to feel scared, anxious and unable to make sense of the world around them, leading to uncharacteristic behaviour.

Carers need to understand this and try to place themselves in the person’s shoes, looking at the world from their perspective.

As dementia advances and end of life approaches, physical care needs such as managing pain, infections, delirium and eating and drinking, can become a major concern for carers.

But through one-to-one sessions and carer friendships groups we can look at ways to address these issues and deal with the complex emotions dementia evokes together. I am constantly humbled by the compassion, humour and strength carers can find in themselves.

Billy is a great example. We cannot take away the pain he and his children feel but we can make life easier for them. Daily visits from professional carers mean he can now pop to the shops or spend an hour in his allotment, knowing Rosa is receiving the best of care. We will always be there to talk things through with him and offer advice and support.

“The carers have big hearts,” says Billy. “They say it makes their day when Rosa smiles. She has a lovely smile.”

For more information about dementia and the support available, visit dementiauk.org or stcuthbertshospice.com