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Dementia care - Fragmented but not irreparable

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approaches to dementia care, care services and care homes, respite care

Unpaid carers are still the mainstay of support for people with dementia in the UK. Research spanning several decades, perhaps even half a century, describes the nature of their day to day lives, the financial costs to their pockets, their personal costs, such as distress, physical and psychological burden. 

There has been research that has developed many tools and scales developed to measure much of this for professionals to use when assessing a family’s needs, but – yes there is a but.

There is still a lack of consistency in what support and services carers of people with dementia can even hope for, let alone expect. Services for families affected by dementia and their commissioning is still very much a post-code lottery, or perhaps more so, dependent upon individuals within any locality that really do want to improve care for this growing group of people.

Roy Lilley, in his recent column for NHS Managers (https://ihm.org.uk/nhsmanagers-net/), outlined the issues very well but there are several points I would like to add.

Now many of you might not read further given that I work for Dementia UK and promote Admiral Nursing as a solution to commissioner’s problems; you might say, ‘well she would say that wouldn’t she’.  But hear me out.

Admiral Nursing is the only specialist nursing service that specifically focuses on supporting such carers, but it is criticised for the lack of sound evidence of its effectiveness, cost benefits, and relationships to other health and social care services is limited.

However, what do we regard as sound evidence?  As a model of specialist nursing it has no more and no less evidence for its effectiveness than specialist nursing models for other conditions, such as, multiple sclerosis (MS), Parkinson’s disease, motor neurone disease.

However, in dementia care there is a belief that what families affected by dementia need is a dementia friend or a dementia buddy to signpost them to services and supports available. 

If you were diagnosed with MS would you want an MS friend to help you to adjust to your diagnosis, help you navigate through the mine field of social and health care, advise you on symptoms and their management, support your families through tough times? Probably not.

Similarly if diagnosed with cancer, would you want a cancer friend or would you want a Macmillan Nurse?

You would want the most skilled and effective support available – I would.  So why should we expect that families affected by dementia would want any less – they often have to settle for what there is.

We have seen a growth in a variety of roles: dementia friends, dementia navigators, dementia buddies but there is also scant evidence for the benefits of these roles too.

Dementia UK rigorously evaluate all new and existing Admiral Nursing services and have generated valuable evidence and data that suggests positive outcomes and impact of the model (see Dementia UK website: https://www.dementiauk.org/).

Admiral Nurses, where commissioned, are success in working with the most complex cases. They work predominantly with older carers and vulnerable families who care for the person with dementia; these carers are often heavily involved in caring activity, fail often to recognise their own physical and psychological needs and who may be at risk.

Roy states that Admiral Nursing does not go ‘deep enough’ but if commissioned appropriately it does through the process of case management of families affected by dementia.  And that is the rub – IF commissioned appropriately.  Unfortunately health and social care commissioning is far from integrated these days meaning that the trajectory of conditions such as dementia are becoming more fragmented than ever before.  Effective case management requires that the service is commissioned from the outset – diagnosis – and means the Admiral Nurse can work with a family throughout the course of the disease and then after death, in supporting family carers to ‘pick up their lives again’.

Roy made reference to the midwifery approach as an analogy for a process that may work for dementia yet then goes on to say that we should not medicalise dementia.

Dementia is currently ‘homeless’ – no longer aligned with mental health – quite rightly – but does not fit squarely in neurology (albeit its cause being brain diseases!), not fully a health or social care issue (moving in and out of each as the human condition often does); so where does that leave it when viewed from the skewed lens of the commissioner?

Admiral Nursing case management navigates families through services dependent upon their collective needs. Admiral Nurses are seen to be too expensive in dementia care but indeed our cost per unit probably equates to a midwife!

Society values children, so worthwhile the investment of a skilled nurse – why do we not equally value older people? Admiral Nursing can go as ‘deep’ as any commissioner(s) chooses – deep enough to really make a difference.

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