'Dementia does not define me'

Speakers at a recent conference expressed the important role nurses play in reducing the stigma that surrounds dementia, which was highlighted in a new report by the Alzheimer's Society.

Speakers at a recent conference expressed the important role nurses play in reducing the stigma that surrounds dementia, which was highlighted in a new report by the Alzheimer's Society.

For Shelagh Robinson her identity is about her love of literature and helping others. Yet she, like many people with dementia, feels others define her by her condition.

Shelagh Robinson: 'What defines me is that I am a counsellor and passionate lover
of Shakespeare... not the dementia'

Ms Robinson was interviewed by the Alzheimer’s Society for a report and spoke at their recent annual conference, because she wanted to give a voice to those who have dementia.

She told the conference: ‘I have dementia and therefore I need some support, but what defines me is that I am a counsellor and a passionate lover of Shakespeare. These things are me, not the dementia.’

Ms Robinson was diagnosed with Alzheimer’s disease seven years ago and continues to work as a counsellor and a consultant supervisor to other counsellors.

There are 850,000 people with dementia in the UK according to Dementia UK figures, but that figure is set to rise to more than one million by 2025.

3 in 5

carers say their health has been negatively affected by caring for someone with dementia

The Alzheimer's Society’s report Turning Up the Volume highlights the stigma that still surrounds dementia with nearly one fifth of the public saying they would feel ‘fairly or very uncomfortable’ if someone they knew told them they had dementia.

Dementia friends

One of the ways the organisation is aiming to improve this is by encouraging more people, including nurses, to become ‘dementia friends’.

Dementia friends training helps volunteers to understand more about the condition, whose symptoms include memory and cognitive difficulties and sometimes changes in mood and behaviour. The training also suggests small steps that dementia friends can make to help a person with the condition feel less isolated.

The society’s director of campaigns and partnerships Rob Burley said: ‘The benefit of becoming a dementia friend is that you will have a much better understanding of the impact of dementia.’

Rob Burley: 'A lot of carers are becoming ill as a result of caring'

He said the unique contact that nurses have with patients who have other conditions makes them ideally placed to spot when something is awry.

‘Nurses have a key role, not only in caring for people with dementia, but in helping to diagnose dementia in the first place,’ Mr Burley said in an interview with Nursing Older People at the conference in London, attended by more than 400 people.

He added: ‘Seven in ten people with dementia are living with another condition as well so they will be in contact with nurses.’


of people living with dementia worry about becoming a burden

Mr Burley highlighted that the report showed three in five carers say their health has been negatively affected by caring for someone with dementia.

‘A lot of carers are becoming ill as a result of caring and it may be that they are presenting with conditions as a consequence. Therefore, nurses have a fantastic role to play here,’ he said.

There is also a role for midwives, he added, saying dementia cuts across all services.

RemPods, such as the 1950s and 60s living room (above) and vintage pub (below), are being used during hospital stays to create pop-up reminiscence spaces


Mr Burley, who is a new father, gave the example of a dad-to-be in his antenatal group who was concerned about who would care for his parent, who has dementia, when he was in the delivery suite.

If signposting to local services proves difficult, nurses can contact the national dementia helpline for support with care pathways, he said.

Communication difficulties for those with more advanced dementia and the need for care homes and emergency services to be aware of this were also highlighted at the conference.

Former health minister Hazel Blears, who is a trustee of the Alzheimer’s Society, told of her and her 87-year-old father’s experience of her mother’s dementia.

Hazel Blears was inspired to lobby for her local area of Salford to get a £50 million integrated
health and social care budget

Her mother, who at the time was otherwise healthy, had to go into a care home because her father, who was her main carer, experienced a long wait for back treatment. As a result, her mother lost 9lb in weight and was admitted to the emergency department with dehydration.

‘They would ask her if she wanted a cup of tea – she didn’t know if she wanted a cup of tea and would say “no” … The care home is now shut down,’ she said.

The situation inspired Ms Blears to lobby for her local area of Salford to get a £50 million integrated health and social care budget.

1 in 14

people over 65 have dementia

Integrated care models

A session at the conference also heard about other models of integrated care where simple ideas are being used to improve the care of people with dementia.

Viccie Nelson: 'We have helped reduce unnecessary hospital stays'

Sutton's care home vanguard programme director Viccie Nelson explained the use of a ‘red bag’. It contains vital information about a resident’s health such as any existing conditions and current health concerns and medication, and their personal belongings. It also states that the person is a care home resident to allow potentially earlier discharge from hospital.

‘We have helped to reduce unnecessary hospital stays,’ said Ms Nelson.

Other projects are improving hospital stays for patients through the use of pop-up reminiscence spaces, known as RemPods, with themes including a vintage pub and a ballroom.

NHS England chair Malcolm Grant summed up the feeling that, although dementia is a public health problem, it is also a ‘social phenomenon’ because of its impact on families, carers and wider society.

Malcolm Grant: 'Dementia is also a social phenomenon'
Social care is dementia care

Homecare worker Caroline Weimar often works for free because otherwise the needs of those she cares for will not be met.

Ms Weimar, who has worked as a carer in Southwark, London, for 30 years, told a session on social care at the conference about an 89-year-old woman she calls ‘my Joan’.

Caroline Weimar: 'People with dementia have a price tag on their head'

Ms Weimar had to wait for approval – from a social worker and then her employer – for her time to be spent on taking Joan to hospital. She ended up going in her own time.

‘People with dementia have a price tag on their head – how much are you worth? Well, to me, they are priceless,’ Ms Weimar said.

‘It’s not their fault that they don’t remember or that they need my care or are in the situation they are in.’

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