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A pathway for dementia care or the fictional yellow brick road?

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approaches to dementia care

Care pathways have become a ubiquitous term in health and social care. A care pathway is defined as a complex intervention for the mutual decision-making and organisation of care processes for a well-defined group of patients during a well-defined period. Care pathways are generally recognised within a framework of case management for long term conditions and supported by a set of core features, such as, a statement of the care goals, patients’ expectations, communication across the care stakeholders (including the patient and their families) and coordination of the care that is supported by documentation, monitoring, and review. The aim of a care pathway is to enhance the quality of care across the continuum by improving patient outcomes, increasing patient satisfaction, and optimising the use of resources. From a patient and family perspective they can expect that a care pathway maps out the care journey they can expect, guiding them across organisational boundaries and can act as a template for what comes next.

Dementia care pathways have been developed that detail care once a diagnosis has been made.  Each person and their family and/or carer should be offered a consistent level of post-diagnostic support that is in line with NICE recommended care. This will help them live well and is why all people living with dementia, along with their families and carers, should be supported by a named coordinator with whom they co-create a meaningful care plan in which they feel invested. The care plan should be reviewed at least once a year, and reviewed as and when the person’s needs change. It is argued, quite rightly, that a timely diagnosis is an important first step on the pathway in receiving tailored support and treatment so giving people the best opportunity to plan for their future and prevent crises.  The work of the National Collaborating Centre for Mental Health built on the NICE recommendation, this is a named care coordinator. The NHS England well pathway detailed how people with dementia and their families could live well throughout the stages of the pathway: preventing well, diagnosing well, supporting well, living well and ultimately, dying well.

However, despite this very worthy policy and guidance laying out a care pathway for those affected by dementia there remain huge gaps in the pathway pavement; indeed the espoused pathway seems to end shortly after the diagnosis of dementia and receipt of any immediate post diagnostic psychosocial education which often is delivered over a period of six to eight weeks.  The assumption being that the person will have been allocated a care coordinator to support care thereafter and review care every 12 months; what if your local commissioners fail to fund such a care service or deem that a volunteer (whose family member may have experienced dementia) will fit the bill for a care coordinator, albeit the NICE evidence based guideline recommends that such a role, as a minimum, be a specialist dementia nurse at a Band 6 skill set and pay scale. This abrupt end or crack in the dementia care pathway is disruptive to a care continuum and will often mean that a family has to hit a wall of a crisis to then get back onto a pathway.  This may mean many years after the initial diagnosing well stages no robust pathway can be found resulting in high distress and a possible increase in morbidity.  Indeed Terry Practchett, who died in of dementia in 2015, wrote in his blog that he found no clearly plotted pathway to the course of his dementia and argued that if he were diagnosed with another disease, such as cancer, then a clear pathway would unfold before him.

Dr Karen Harrison Dening

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No care plan given

I can confirm in 2021 that care plans are not provided at diagnosis in Rugby (Warwickshire). My mother is now 90 and was diagnosed a few years ago and discharged immediately to GP care only followed by a pack of information through the post. The support group I attend is run by dedicated retired NHS volunteers. We are looking into the lack of follow up care presently.

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Alessandro Bosco

I have just started my second year of the PhD in dementia care, and as attendee of the Public and Patient Involvement (PPI) meetings at the IMH, I have frequently met with people with dementia and their family carers and talked with them about their caring experience.

Jen Yates

Crisis can occur in a person with dementia for many reasons that may be related to the person’s physical health, risks and hazards at home, social changes, behavioural changes, or problems that a family carer is facing.

Jen Yates

Both hearing loss and dementia become very common as people get older and it is therefore to be expected that a lot of people will have both problems eventually. As readers of this blog will probably know, there are about three-quarters of a million people living with dementia in the UK.