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Recognising the role of the specialist dementia nurse in the community

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Dr Penny Hibberd, RGN, RMN, DN, PGCLT (HE), talks about her role as a specialist community dementia nurse working for an independent home care organisation.

Dementia continues to make media headlines. Following the G8 Dementia Summit late last year, the Health Secretary pledged to double the Government’s research funding for dementia by 2025, to £132m. There have also been calls for more to be done for those living with the condition now.

According to Alzheimer’s Society statistics , there are currently 800,000 people in the UK living with a diagnosed dementia, two-thirds of whom are living in the community. However, the true figures are probably much higher than this, as it is estimated that less than half of people living with dementia actually have a diagnosis.

Becoming a specialist dementia nurse requires additional post-registration training in the specialism area. The nurse should also, ideally, have at least two years practice experience in dementia care. Usually, people working as a specialist dementia nurse will also hold a registered mental health nursing qualification. Most NHS specialist nursing roles will also demand degree level qualifications, as well as expecting the nurse to be working towards a Masters in their specialism. As a practicing specialist dementia nurse there are so many routes to take, because dementia crosses all fields of medicine.

One of the most important requirements for a specialist dementia nurse in the community, in addition to having an excellent understanding of the pathologies involved in dementia, is the need for a high level of assessment skills – not just of paper-based tests – but in observation of the patient and the surroundings in which they live.

Unlike Elderly Mentally Infirm (EMI) registered care homes, community agencies and home care organisations are not required to have a registered nurse working within the organisation. However, with the increasing pressure to keep people with dementia in their own home for longer, I would argue that the role of the specialist nurse is vital in these organisations, to support the organisation, the person and their family.

Working with The Good Care Group, an independent care provider that offers dementia care at home, I spend a great deal of time in people’s homes, talking to people with dementia and their families and liaising with our team of professional carers. This requires good relational care skills as you always need to take account of the emotional needs of the carers and the family, as well as the person with dementia. You need to be a confident, autonomous decision maker and you need to use all of your observational skills to gain a well-rounded picture of the situation and to understand what is important to all the people involved.

One of the effects of dementia is that the person can feel like they are losing control, which is why they can be resistant to accepting professional help. However, moving to a care home environment can accelerate the feeling of losing control. Ensuring that the person is professionally cared for, in their own home, in an environment where they feel comfortable and in control, and where they are able to make their own decisions and maintain familiar routines, can have very positive outcomes.  The professional carer can work alongside them, looking after their health and care needs, with the additional support of a specialist dementia nurse when necessary. This can also offer a solution for the estimated 17,000 people under 65 diagnosed with dementia in the UK, who might still be caring for teenagers or young children, which can make the
family dynamics very complex.

It should always be recognised that making the choice to receive 24-hour care at home is as life changing a decision for the person with dementia and their family caregiver as a decision to receive care in a residential placement.

Where the complexities of care are high, a specialist nurse is best placed to assess a persons needs, from both a clinical and emotional perspective. Every dementia patient is different and many also suffer from multiple physical illnesses. It requires a great deal of skill to balance medication and different types of care and to consider the needs of everyone living in the home.

Getting a comprehensive history of the person and information about their day-to-day life is an important part of the assessment. This can provide valuable information for the team who are matching the care team to the person. I believe that having a good life history of the patient is the most useful tool you can have when working with people with dementia. This requires you to be a very good listener.

The specialist nurse also provides support where there are behavioural changes as a result of the condition’s  progression. There may be challenges to adequate nutrition and hydration and difficulties with motivation and sleep patterns. Where care needs are high, delivering 24-hour care at home will also involve working alongside other health and social care professionals. The specialist nurse can assist with the co-ordination of this care, either through regular communication with team members or by facilitating review meetings.

Facilitating regular reviews of clinical care, such as medication and therapeutic interventions, are also within the scope of my role as a specialist nurse – an area that can be neglected in community care. Providing suitable intervention to prevent a crisis will help reduce the need for anti-psychotic drugs or the need for hospital admission due to infection, which will have an impact on the cost of care within already stretched clinical commissioning group budgets.

The provision of 24-hour care at home can provide a resolution to a person’s practical care needs for family members, but does not always alleviate their emotional burden and stress. The specialist nurse is also trained to provide psychological support and advice to family members. It is important to remember that a carer’s journey is not an easy one, and the stress of living with a person with dementia can have an effect on that person’s physical health too. As a specialist dementia nurse, working as part of the care team delivering 24-hour care at home, I have an active role to play in supporting the whole family.

With our increasingly ageing population, and with a greater number of people being diagnosed with dementia, I feel that the role of the specialist dementia nurse needs to be better recognised. We offer a vital resource to meet the special needs of this increasing sector of our population and can help to optimise the care they receive. I would therefore urge the Nursing and Midwifery Council (NMC) and the Royal College of Nursing (RCN) to formalise the role of the specialist dementia nurse and to band them according to their qualifications and the responsibilities that they take on.

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