Dr Tomas Welsh is the BGS Deputy Honorary Secretary and former co-chair of the BGS Dementia, Delirium and Brain Health SIG.
This article was originally published in the recent Issue 100: Movement Disorders of AGENDA. Join the BGS to read the full magazine.
As clinicians working with older people, we are accustomed to complexity. Our patients rarely present with just one problem, in just one domain, at just one moment in time. In addition, services can vary wildly between different geographic areas, and treatment and support pathways can differ significantly depending on whether a diagnosis falls under a physical health or a mental health team. Sometimes the specialist knowledge we hold may be knowing which services vary by patient address, GP address, or the particular hospital or outpatient clinic location where they are being seen.
At the end of a busy clinic, I was reflecting on these challenges and the impact on patients and families. In particular, I had in mind two patients both referred due to falls but who turned out to have with what are, biologically, closely related diagnoses. John, who reported classic symptoms in keeping with Parkinson’s disease; and Jill, who was experiencing visual hallucinations, cognitive decline, and REM sleep behaviour disorder where we had made a diagnosis of dementia with Lewy bodies. They and their families were both about to embark on very different journeys – one deemed to fall under physical health, one under mental health.
This split is not merely a philosophical inconvenience. It reflects a broader challenge across the NHS and social care: the persistent separation of 'physical' from 'mental' health. For older people with multimorbidity and frailty, those boundaries are especially nonsensical. Carers navigate not just appointments, but living with uncertainty and, at times, crisis. It is often challenging to know where one symptom ends and another begins. This is precisely why holistic care is not a luxury but a necessity. The more fragmented the system, the more work is placed upon patients and families. The more integrated the response, the more likely it is that quality of life remains central.
Time for a change?
Encouragingly, there is momentum for change. In the past two years, we have seen important developments in research, in both therapeutics and models of care.
Therapeutics
Research in the UK has accelerated. The CHIEF study, recently completed, was the largest ever drug repurposing trial in Parkinson’s disease undertaken in this country. That scale alone represents progress: a recognition that rigorous trials can recruit older and complex populations, and indeed it provides further evidence that there is a healthy appetite for engagement with research for older people. On the therapeutic front, Foslevodopa, Kynmobi and Inbrija are now available in the UK, offering new options that can reduce 'off' periods, enhance autonomy and support patients across different stages of disease.
Models of care
The PRIME Parkinson trial has finished - a significant milestone for model-of-care research. PRIME evaluates proactive, multidisciplinary, community-based care for people with Parkinsonism of any cause designed around the needs of the person rather than the specific diagnosis. The PRIME model could be hugely important as it is potentially highly applicable to other groups, not least those with other neurodegenerative diseases such as Alzheimer’s disease. More information about the trial can be found at
primeparkinson.blogs.bristol.ac.uk.
If trials like PRIME succeed, it will be because they bring gerontological principles into mainstream movement disorder care: proactive rather than reactive, person-centred rather than disease-centred and collaborative rather than siloed. These principles resonate strongly with BGS publications on proactive, age-attuned community care, rehabilitation, and reablement (see panel to the right for more on these). They are also consistent with the 'shifts' outlined in the NHS 10 Year Plan - away from episodic crisis management and towards continuity, prevention and better support for carers.
NHS 10 Year Health Plan
The 10 Year Health Plan for England offers a potentially important opportunity to embed this more holistic vision into national policy. Its emphasis on a shift “from hospital to community, analogue to digital and sickness to prevention” aligns well with what older people living with movement disorders need in practice: continuity, proactive support and neighbourhood-level multidisciplinary care. The Plan’s commitment to neighbourhood health services, personalised care plans, and integrated teams could provide the structural backbone for models such as PRIME, enabling patients to move through the system without being passed between silos. If fully realised, these reforms could help ensure that Parkinson’s, Lewy body dementia and related conditions are managed as whole-person, long-term conditions, rather than episodic motor or cognitive symptoms treated in isolation.
Cognition
Of course, integrated care for movement disorders must also grapple with cognitive impairment and dementia. An estimated 50–80% of people with Parkinson’s will develop cognitive impairment, and dementia with Lewy bodies remains both underdiagnosed and inconsistently supported. There is considerable variation in what service a person with dementia with Lewy bodies may fall under. Potentially a geriatric medicine or neurology led movement disorder service, a psychiatry led memory service, or a mixture of these, sometimes siloed by organisation and by incompatible IT. For the older person, that fragmentation can feel like being pulled between parts of the system rather than held by the whole.
Positive steps
Returning to John and Jill, what strikes me most is not how different their conditions are, but how differently they are treated. Two closely related disorders will lead them down two separate service pathways, each with its own language, clinics and teams. Yet the things that matter most to them and their families are very similar. As we redesign services, it is that combination of shared lived experience and key research, such as PRIME, that should guide us. Holistic, person-centred and multidisciplinary models will not erase diagnostic nuance, but they will make the system make more sense for the people living with these diseases. There is enormous appetite across our membership to reshape the model of care for this population and to meet rising levels of demand. The ingredients are there; the task now is scaling and sustaining what works.
