Dementia

Living Well with Dementia

Research Leads:

Dr Naji Tabet, Brighton & Sussex Medical School, Ageing Well: Living Well with Dementia Theme Lead

Kath Sykes, Implementation Manager, Living Well with Dementia

Dementia Motif
Dementia Showcase

The aim of the NIHR ARC KSS Living Well with Dementia theme is to become a leading region for dementia research, translating research to improve care and help people to age well and live well with dementia.

Kent, Surrey and Sussex are in an ideal position to lead on ageing and living well with dementia research. As a region, we have a higher proportion of older people, and people living with dementia and our ageing population is growing faster than the national average.

We have four sub themes to support our aims:

  • Enabling routine outcome measurement in dementia to evaluate existing models of provision of memory assessment services– developing and evaluating systems embedding patient-centered outcome measures (PCOMs) into routine practice to determine whether the treatments and services provided improve quality of life. ​​

  •  Enabling successful physical and cognitive ageing for people living with co-morbidities– evaluating health and care challenges faced by people growing older with co-morbidities including physical frailty, multi-morbidity and neurocognitive disorder. ​​
  • Empowering general and community hospitals to manage people with dementia well and the transition from hospital to home (or care home)– development, delivery and evaluation of a systematic package of support for people with dementia and carers. ​​
  • Exploring and exploiting the potential of assistive technology to improve quality of life of people with dementia – in collaboration with industry, developing and evaluating untapped potential for assistive technology to improve the quality of life of people with dementia and carers and support them in their homes. 

We are also supporting a number of Living Well with Dementia related PhDs across Kent, Surrey and Sussex including:

  • Outcomes, hopes and fears for patients with memory complaints but no dementia diagnosis following memory clinic assessments (Brighton and Sussex Medical School).

  • Determinants of multiple admission to acute hospital wards for older people with dementia (Brighton and Sussex Medical School).

  • Dementia and Alcohol/ARBD (University of Kent).

  • 2 x University of Chichester Dementia/Ageing related PhDs.

In our first year, we have been supporting the following research studies including a number of NIHR ARC KSS Covid-19 related studies:

  • ADEPT Accelerating Dementia Pathway Technology
     
  • COBALT Combining Memantine and Cholinesterase inhibitors in Lewy Body Dementia treatment trial

  • TIHM Technology Integrated Health Management for dementia

  • DETERMIND  DETERMINants of QOL, care and costs and consequences of inequalities in people with Dementia and their carers

    (DETERMIND is funded by the Economic and Social Research Council (ESRC) and the, DETERMIND-C19 project is funded by UK Research and Innovation (UKRI) and ESRC with the support of  ARC KSS).
  • DETERMINants of QOL, care and costs and consequences of inequalities in people with Dementia and their carers (Covid-19 sub study)
  • STRIDE Strengthening responses to dementia in developing countries
  • ‘Remote’ Memory Clinic: Responding to the clinical need in times of Covid-19 restrictions - An evaluation of feasibility, clinical utility and safety

  • How has Covid-19 affected the quality of life, wellbeing, and care of people diagnosed with dementia and their family carers? A nested Time for Dementia sub study

  • Technology Integrated Health Management for dementia (TIHM extension study) - Using Data Science and remote monitoring to care for vulnerable Surrey citizens.

Throughout 2020, and moving forward, we will continue to engage and collaborate with people accessing services, and health and social care stakeholders to understand needs, gaps, and opportunities for research, including emerging priorities as a response to Covid-19.

 

Current Projects

Remote Memory Assessment Toolkit

memory assesment

The Remote Memory Assessment Toolkit (RMAS) is intended to support best practice in delivering remote services for patients with dementia. The toolkit is aimed at clinicians who assess and diagnose dementia. It has been developed by researchers at Sussex Partnership NHS Foundation Trust and Brighton and Sussex Medical School.

The toolkit is the output from a study funded by NIHR Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS) which aimed to understand patient, carer and clinician satisfaction with and experience of receiving or undertaking memory assessment, during the Covid-19 pandemic. 

Remote Memory Assessment Toolkit: a guide for clinicians 

Patient Information about remote memory assessment appointments 

Patient Video: Remote Memory Assessment 

Alzheimer’s Dementia: Published December 2021Patient experience and satisfaction with remote memory assessment: Responding to Clinical need in times of COVID-19 restrictions

Brighton and Sussex Medical School: Remote Memory Assesment Toolkit

 

The impact of the COVID-19 pandemic on people with dementia and their carers

women 2

The Living well with Dementia team at ARC KSS are pleased to share key findings, messages and a publication for two studies that explored the impact of COVID-19 on the Quality of life of people with dementia and their carers during 2020.

These findings provide insights into the challenges people faced, and factors that supported their wellbeing, with messages that last beyond COVID-19.

The results will be of interest to anyone involved in supporting people with dementia, including: health and social care commissioners; services providing care to people with dementia - such as care homes; the voluntary and community sector; people living with dementia and their carers; general practitioners and people working as social prescribers or in dementia support roles.

The Impact of the COVID-19 pandemic on people with dementia and their carers: findings from studies and key messages

Plos One: January 2022 Covid-19 and the quality of life of people with dementia and their carers publication.

BMJ Open: February 2022 What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study

Alcohol, dementia, and alcohol related brain damage: Key messages for services

demetia

In December, the Living Well with Dementia team at NIHR Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS) and colleagues from the Kent and Medway Partnership Trust, hosted a Dementia and Alcohol Community of Practice. The event was held to share findings from an ARC KSS PhD student's extensive, first year, evidence synthesis, and explore the implications of alcohol and dementia, and alcohol related brain damage (ARBD) for individuals and service. 170 people including: clinicians, commissioners, and representatives from the voluntary sector explored the prevalence, issues, challenges, and ways services can better meet the needs of this population.

 We have summarised key messages from this event that are available to download here.

Dementia care coordinators pilot service, Kent and Medway

dementia newsletter

ARC KSS have been pleased to support the evaluation of the dementia care coordinators (DCC) service, a new role and model of care in Kent and Medway. A small-scale evaluation of the pilot service took place in September, led by Dr Ruth Abrams at the University of Surrey. A larger scale evaluation is currently underway after a successful application for ARC KSS funding.

Kent and Medway dementia care coordinators are unique in that they are all employed through two providers via the ICS, with a DCC at each PCN across Kent and Medway. Their role is to support people living dementia, providing care from pre-diagnosis to end of life. Results from focus groups after the pilot showed that:

- DCCs felt PLWD and their carers were particularly benefiting from having the DCC as a key point of contact to help weave a web of care around them;

- Establishing the roles at PCN level with buy in from GPs could be problematic due to lack of communication and understanding of the role;

- DCCs felt the need to manage expectations about what they could and couldn’t help with, especially being non-clinical professionals.

- DCCs felt a degree of emotional burden, wanting to provide high quality care but also needing to manage their caseloads;

- People living alone were perceived to be more vulnerable with concerns over how to ensure they were supported.

If you’d like further information about this role and study, and to sign up to the upcoming DCC newsletter please contact Kath Sykes.

Read the full report and see the key service improvement recommendations here.

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