PainChek recently hosted a Dementia Workshop at the Care Leaders Network Autumn event in London, exploring the challenges faced by those involved in dementia care, from the individual being cared for, to their loved ones, carer(s), and the wider health economy. In this blog, we share the learnings and outcomes from the session.
With research suggesting that up to 1.7 million people could be living with dementia in England and Wales by 2040 – over 40% more than previously forecast – it has never been more crucial for the aged care sector to unite in addressing the challenges associated with dementia care. By sharing knowledge and implementing best practices, quality of life for people living with dementia can ultimately improve. This is vital as prevalence of the disease continues to rise.
PainChek’s dementia-focused workshop, which was attended by KYN, Dovehaven and other Care Leaders network members, explored the key challenges for those affected by dementia, including the individual and their loved ones, the workforce and care providers, and the sector and wider health economy. Here, we share the challenges identified and the potential solutions and ideas proposed.
Individuals living with dementia and their loved ones
Challenges:
- Knowing when to seek diagnosis of dementia
- Receiving the diagnosis
- Understanding the diagnosis as the individual’s dementia progresses
- Accessing the right services
- Understanding ‘the system’ around dementia
- Stigma and fear of the condition
- Stigma of care homes
- Fear about loss of independence
- Loss of sense of self and/or worth
- Managing a sense of grief whilst the person is still alive
Solutions
To better support individuals living with dementia and their loved ones, the group suggested a number of ideas aimed at driving awareness and enhancing quality of life. They recommended a societal education programme about dementia, delivered by charities, public health organisations, and individuals with lived experience. Advocates with in-depth knowledge and passion were also discussed as a way of reducing the stigma and fear associated with dementia whilst increasing public understanding.
The group also called for more scientific research focused on improving quality of life rather than solely concentrating on medication. Additionally, they suggested information sessions for loved ones of those living with dementia, as well as for individuals moving into care homes, to help them navigate the system and ease anxiety. Open days for care homes were proposed to assist families in planning ahead. Lastly, the group highlighted the importance of addressing public health inequalities related to dementia care.
The workforce and care providers
Challenges
Workforce:
- Overcoming the increase in complex needs for residents
- Addressing these challenges in an already tired system
- Maintaining carers’ desire and passion to continue working in care
- Continuing to manage person-centred care whilst a person’s ability to self-report may decline during disease progression
- Overcoming issues related to caregivers’ pay
- Overcoming the assumption that care is an easy job or ‘unskilled’
- Building on training beyond ‘basic’ to more advanced specialised training
Care providers:
- Embracing and embedding a holistic approach to caring for individuals
- Achieving a balance between self-funded, social funding and business needs
- Overcoming the idea of ‘tick box’ requirements
- Managing the changing age of clients with high acuity needs
- Challenging the model of regulation – getting regulators to recognise the good work being done and not just the flaws
- Improving ability to provide a better level of training, to improve the quality of care
Solutions
In terms of the workforce, the group highlighted the importance of embracing digital innovations, particularly those that assist with timesaving and upskilling. However, it is crucial that care staff understand why they are using these solutions, and for this to be directly linked to improvements in outcomes. They also proposed better funding opportunities for continued professional development, stronger resources for the workforce to refer to that can act as a ‘single source of truth,’ and better rewards and recognition for outstanding care provision.
For care providers, attendees argued there is a need for better business cases to evidence the need for additional resources, better understanding of the cost of care, better investment in technology within its services, and more investment into digital innovation to support caregivers.
The aged care sector and wider healthcare economy
Challenges:
- Lack of funding
- Low pay from the local authorities to provide good quality dementia care
- ‘Postcode lottery’, with ICBs having their own areas of focus and priority which may not benefit individuals living with dementia
- Lack of consistency in training across social care
- Hospitals not being equipped to care for people living with dementia resulting in confusion, distress and deterioration of condition
- The sector and healthcare economy not being able to fully relate to the needs of the sector due to lack of first-hand experience
- Duplication of effort across processes
Solutions
With regards to the local authority and regulators, the group highlighted the need for standardisation across the board, with better collaboration between councils and care providers. They also urged for greater flexibility, allowing providers to outline their specific needs. In addition, better training is needed within the sector according to the group, across local authority and commissioners. This would allow for the development of a better knowledge base and buy-in for stakeholders, more appropriate funding models, improve willingness to enact change, and facilitate the collection of data that can help improve outcomes across both the health and social care systems.
Moreover, a shift to a more proactive approach to care was desired, as opposed to a reactive one. Attendees talked about embracing a truly integrated care model, as well as understanding the desired care journey for all people, regardless of their condition or diagnosis. Part of this was clearly defining and understanding ‘person centered’, to help move away from the perception that care plans are merely a ‘tick box’ exercise. By more effectively assessing individuals’ needs, and focusing on factors such as wellbeing and nutrition, the wider aged care sector has the power to make a tangible difference to the quality of life of residents with dementia.
Summary
Through this workshop, it was apparent that, unsurprisingly, there is appetite for a reform in social care funding to allow providers to meet the increasing needs of the sector and provide a better quality of care, especially for those people relying on social funding to access the care they need.
It was agreed that a better alignment from government, local authorities, regulators and providers is needed to ensure an outcome-focused care model, moving away from outdated approached to inspections and compliance. Care providers want regulators to recognise their successes and be open and receptive to learning more about ideas and initiatives that fall outside the scope of their inspections.
It was also clear that more needs to be done across the board to attract people to work in the care sector and for caregiving to be recognised as not only a skilled job, but a career, with the appropriate levels of remuneration and training, as well as opportunities for further development and recognition.
PainChek would like to thank those who participated in the Care Leaders Network workshop for sharing their invaluable insights and ideas. Together, we can help shape the future of dementia care.
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