Dementia care - a community approach

I have worked with older adults throughout my nursing career both in the care home sector and in the community. Over the past year, my knowledge of how to support clients with a diagnosis of dementia and their families and carers has developed. I have been privileged to work with a team of professionals in the South Tees area who are passionate about promoting an inclusive community approach.

Before I explain the multidisciplinary approach locally, some background information from World Health Organisation.

• There are currently more than 55 million people worldwide living with dementia. Every year there are nearly 10 million new cases. 
• Dementia results from a variety of diseases and injuries that effect the brain with Alzheimer's disease being the most common, contributing to 60 to 70 percent of cases. Alzheimer’s disease was first described in 1906 - over 100 years ago - by the German psychiatrist and neuropathologist, Alois Alzheimer. The disease named after him is the most common form of dementia today. Its prevalence continues to increase with an aging population.
• WHO recognises dementia as a public health priority and published a global action plan in May 2017 (WHO 2017).
• The plan includes creating dementia inclusive societies and increasing research and innovation to tackle the disease.

The work in the South Tees area certainly covers an inclusive approach for clients, families, and carers. A task force was formed in 2022 which meets monthly. This group was formed by the local Admiral nurse Jade Lavan and Marie Kerr from Dementia Action Teesside.

The group consists of members from the Alzheimer's Society, Age UK Teesside, local councillors, staff in public health, Commissioners of services, social workers, MIND support workers, Healthwatch, domiciliary care services nd social prescribers.

The aim of the group is to share good practice, join up resources for the best outcomes, and support each other to link with GPs, district nursing and community psychiatric services. Objectives include identifying gaps in services and developing new ways of working to ensure the resources available in the area are used for the best outcomes and are inclusive for clients, carers and families. The group has been working on a health and wellbeing passport for clients in the South Tees area to support clients and their loved ones on their health and social care journey. 

Initiatives so far have seen links being forged with local care homes to form singing groups that are available for the community to attend.  A local rugby club promotes indoor and outdoor sports and activities other than rugby. Services have been developed to support clients and their carers to visit different local pubs for tea on a Saturday.  The groups and services are very much client driven, offering what people need to live well. The approach does not use 'labels' to form groups or publicise activities but provides opportunities to support and share the experiences of all involved.

Jade Lavan is an Admiral nurse, a specialist dementia nurse providing support for families affected by all forms of dementia. Admiral nurses help people stay independent for longer and support the people caring for them so that they have the strength to cope on the bad days and the energy to enjoy the good days. Admiral nurses are employed by Dementia UK, see Dementia UK for further information and their helpline number. Their helpline operates 7 days a week and advice is available from an Admiral nurse on telephone number 08008 886678.

Dementia Action Teesside supports people to live an active life in their communities with the aim of making Middlesbrough and Redcar and Cleveland more dementia friendly. Dementia Action Teesside runs regular Dementia Friends awareness sessions for any business or organisation. Marie Kerr works closely with the Alzheimer's Society (national) to train volunteers and businesses to become Dementia Friends.

Dementia Action Teesside offers reminiscences through music and holds regular dances in a number of locations across the Middlesbrough and Redcar and Cleveland areas. A DJ presents the group sessions. A large projection screen projects groups performing on Top Of The Pops along with other performers from the 1950s, 60s and 70s, taking requests from people attending the groups.

Marie Kerr introduced me to the books written by Dr. Wendy Mitchell who was diagnosed with dementia at the age of 58. They are well worth a read to gain an understanding of how to live well with dementia.

1. Somebody I used to know (2019)
2. What I wish people knew about dementia from someone who knows (2023)
3. One last thing. How to live well with the end in mind (2023).

Dementia Action Teesside promotes the Herbert Protocol across the area to support carers. The protocol is a simple risk assessment tool that is used in the event of an older adult with care and support needs going missing. It contains information about the person at risk and can be passed directly to the Police at the point of the person going missing. The information includes medication needs, places the person has previously been found, historic addresses and a photograph. Many Police forces around the country now use this protocol to have vital information at hand should it be needed.

South Tees is covered by the Cleveland Police area and their website includes Information on the Herbert protocol.

Cleveland Police has liaised with local care homes. Should a person with dementia go missing and be subsequently located by the Police, the person can be taken to a local care home instead of a police station until their carer arrives or other support is acquired.

Dementia Action Teesside actively works to promote John's Campaign across the local area. This campaign is for people with dementia to be supported by their families and carers should they be admitted to hospital, a care home or require extra support with GP's visits.

Sue Lee, a group member and primary care link worker, has worked tirelessly to promote the role of carers who care for a loved one with dementia. Her work has involved implementing the NHS Quality Mark for carers. This includes offering carer awareness sessions to all staff in GP surgeries and supporting staff who choose to become carer ambassadors.

As well as a community inclusive approach, WHO identifies the urgent need for research in their moving forward plan. Major advances in medical research have reduced deaths from cancer, cardiovascular disease, and diabetes over the past decades. In contrast, deaths from Alzheimer’s disease have continued to rise, reflecting the lack of effective treatments and the increased prevalence of the disease. 

There has been research published recently on a drug called Lecanemab also known as Lwambi. The drug is for early stages dementia caused by Alzheimer’s disease and has been approved for use in the United States and it is hoped the UK regulatory body will review the drug trial data for use in the UK.

In other research, a new vaccine has been developed by researchers in Japan. This vaccine has not been tested on humans, but the researchers have created Alzheimer’s disease in mice. The Alzheimer’s disease mouse model mimics the human brain and by testing the vaccine on mice, it points to ways to prevent or modify the disease process.

On a personal level, I have been fortunate to discover more about current research and drug development in Australia. As a chemistry graduate myself (many decades ago in 1983), I was very proud when my youngest son, Reuben, went to the same university as me to study chemistry. I’m even more proud that he has had the opportunity to study drug development at Macquarie University in Sydney, Australia. His PhD scholarship is focusing on drug applications to help to stop the progression of Alzheimer’s disease.

There are clinical trials in many areas of the world and hopefully, in the not-too-distant future, a cure will be found. Worldwide, almost 50 million people live with dementia (over 130 million predicted by 2050). The direct costs for health and social care continues to rise in the UK (£25 billion in 2021; Dementia Statistic Hub), with indirect costs such as lost earnings and unpaid carer time (1.1 billion hours in 2021) contributing significantly to that figure.

In conclusion, I’ll share a recent publication: Dementia and Hope: Our vision for dismantling the barriers which disable a million people in the UK (Hare, 2023) which outlines an excellent framework for dementia care and captures a vision for inclusive communities and positive change.