Roundtable report: Dementia advocates discuss strategies for supporting independence and pain management

Dementia advocates discuss strategies for supporting independence and pain management at roundtable

Eight leading care sector representatives and dementia advocates came together to discuss the importance of maintaining independence for people living with dementia in a roundtable discussion held by digital pain assessment company PainChek in London (3 December).

With unidentified and untreated pain having a significant impact on mobility and cognition in people living with dementia, and the number of UK people living with dementia expected to reach 1.4 million by 2040, PainChek’s roundtable, chaired by the company’s Drew Hunt, aimed to explore how the social care sector and society can better approach dementia care and address pain management to support more independent living.

Chris Norris, who was diagnosed with frontotemporal dementia 12 years ago, offered insights into his experience of living with the disease and expressed the importance of giving hope to those newly diagnosed. He said: “Following a dementia diagnosis, other people often think you can’t achieve anything anymore. More education around the subject is certainly needed to change this. I like to say that dementia comes in ‘cans’, meaning I focus on things I can still do. By putting in place coping strategies and doing things that make your heart sing, you can live as best you can with dementia and help maintain your independence for much longer.”

Speaking about the impact societal perception of dementia has on individuals, Beth Britton, dementia campaigner, writer, and trainer, said: “There has always been a stigma around dementia, with people often receiving a delayed diagnosis and there being a misconception that it only affects older people. After diagnosis, people aren’t given the tools and support they need. Not only this, but a person’s life with dementia starts before diagnosis, especially during the wait for a memory clinic appointment. People need support and hope at all of these stages to come to terms with the situation and prepare for the future.”

Professor Martin Green, Chief Executive of Care England and Independent Sector Dementia Champion for the Department of Health and Social Care added:

“With dementia, there are things that can be done to support people to live the best life possible. There is not currently an understanding that dementia care needs to be a priority – if dementia was something that affected children, society’s approach would be much different. We need to address the disparity in resources and the lack of ambition to give people living with dementia the choices to do the things they enjoy. A risk averse approach leads people down roads where they have no choices. It is about allowing people to define their own goals.”

Hannah Miller, Head of Dementia at Orchard Care Homes, echoed this sentiment:

“It is true that education is desperately needed – society is decades behind where it should be. Goal setting is a key part of learning disability care, but this seems to disappear when talking about care for dementia. A mindset shift is needed to reinforce the fact it is possible for people living with dementia to have a positive experience at some points, of some days.”

Shantelle Million-Lawson, Chief Operating Officer at TSA Voice, added:

“Having cared for people supported with end-of-life care as well as those with learning disabilities, I saw a massive disparity in funding and a completely different approach to care planning. Learning disability support is much more focused on what the individual wants to achieve. We need to find a balance between care planning and support planning to make dementia care much more inspiring.”

Drawing attention to the ways in which pain and pain management can impact the independence of people living with dementia, Hannah Miller said:

“There is an inequality in care in that those living with dementia cannot accurately and reliably report their pain, meaning it is often expressed through their behaviour. Unidentified and untreated pain also impacts mobility and therefore independence. Once pain management is right, we can reduce the use of medication and therefore its side effects, as well as the costs associated with prescribing, purchasing, and monitoring the use of such medications. Not only this, but we can involve residents in more meaningful, enjoyable activities, as they are comfortable. That’s why we champion PainChek as a tool – having the technology puts pain at the forefront of our carers’ minds.”

Tandeep Gill, Head of Business Development at PainChek, added:

“Overprescribing pain medications to try and reduce risk essentially just increases risk in other areas. In addition, the impact of polypharmacy on cognition is significant and can stop people from

wanting to take part in meaningful activities, which is also harmful. By building digital pain assessment tools such as PainChek into policies like fall prevention, care providers can reduce hospital admissions and lessen the burden on caregivers, which is crucial from a workforce and capacity perspective.”

Wrapping up the discussion, the participants outlined some of the wider factors influencing the ability of people living with dementia to remain independent for as long as possible

Louis Holmes, Digital Transformation Programme Manager at North Central London ICB, said:

“Supporting care home residents in maintaining their independence is essential, but so is empowering individuals in their own homes, including unpaid carers. Sharing knowledge of best practice across local authorities is key, as social care goes beyond service delivery – it’s about testing, learning, and embracing a person-centred approach.”

Beth Britton said:

“We need to begin with language and talk about support rather than care – working side-by-side with individuals rather than ‘doing to’ them. People living with dementia need to have a support plan that gives them autonomy and enables them. When we work with the person, we can bring about better outcomes. Whilst funding is important, language and messaging holds a lot of weight too.”

Martin Green added:

“The journey must begin at the GP level, where knowledge of local resources and services needs to be shared. Co-producing these resources with people living with dementia also helps to ensure it meets real needs. People want practical, accessible solutions within their control. It’s crucial that projects and examples are readily available, and that regulators lead the agenda in driving this forward.”

Chris Norris said:

“If my carers aren’t well and well-supported, I’m not well or well-supported. Dementia doesn’t just apply to the person with the diagnosis, it applies to their family too. That’s why we need to look after everyone caring for and supporting the individual. Together, anything is possible.”

Chris is part of a group of nine people living with dementia who worked with researchers to produce ‘My Life, My Goals,’ a self-help guide for people living with dementia to choose what they want to focus on. To view and download the guide, click here.

For more information, visit: https://painchek.com

-Ends-

(Left to right) Tandeep Gill, Louis Holmes, Shantelle Million-Lawson, Chris Norris, Beth Britton, Professor Martin Green, Hannah Miller, and Drew Hunt.

Notes to editors:

Issued for and on behalf of PainChek® by V Formation Limited. All press enquiries or for more information, contact: Lucy Faulkner: lucy@vformation.biz / 07761 492802.

About PainChek: PainChek® is the world’s first regulatory-cleared medical device for the assessment of pain, enabling best-practice pain management for people living with pain in any environment, from those who cannot reliably self-report their pain, those who can, and for those whose ability to self-report their pain fluctuates.

PainChek’s vision is to give a voice to those who cannot reliably verbalise their pain.

The PainChek® app is available on smartphone and tablets and combines PainChek’s AI pain assessment tool, which intelligently automates the multidimensional pain assessment process, with the Numerical Rating Scale (NRS). This hybrid functionality allows accurate, consistent pain assessment at the point of care, and for care to be considered in PainChek’s detailed reporting suite, PainChek® Analytics.

Globally, PainChek® has attained regulatory clearance as a medical device in Australia, Canada, the European Union, New Zealand, Singapore and the United Kingdom, with FDA review in the United States currently in progress.

PainChek® has contracts with 1,800 aged care facilities globally, with more than six million digital pain assessments conducted to date, and is trusted by thousands of nurses, carers and clinicians.

Using PainChek®, facilities can:

· Ensure greater consistency, continuity and diagnostic certainty in pain assessment and management by decreasing subjectivity and removing unintentional assessor bias

· Streamline the pain assessment process for time-poor carers, with access to the PainChek® tool, the NRS, pain trends, and charting in one solution

· Simplify record-keeping and documentation to demonstrate compliance and support funding claims, with all historical pain assessment data in one place

· Enhance engagement with GPs and allied healthcare professionals

Clinical studies conducted in Australian and UK residential aged care centres have been published in various peer reviewed journals including Journal of Alzheimer’s Disease. An article in BMC Geriatrics indicates that PainChek® is a valid and reliable instrument to assess the presence and severity of pain in people with moderate-to-severe dementia living in aged care in the UK. Further information on clinical studies can be found here.

PainChek® has successfully supported accurate pain assessment and management for thousands of adults worldwide living with dementia, disability, or other conditions impacting their ability to self-report pain. Building on this success of this technology, the clinically validated PainChek® Infant app identifies and detects six facial action units indicative of post-procedural pain in infants aged one month to 12 months.

The PainChek® Infant app has received regulatory clearance in the UK, Australia, Europe, Singapore, Canada, and New Zealand, with FDA review in the US currently in progress.

The need for PainChek as a best-practice pain management solution also extends to older people living at home and with access to home care packages that enable long-term home living. PainChek is now expanding into home care by partnering with home care and disability service providers.

For more information, visit: https://painchek.com