Dementia

“Dementia is the name for a group of symptoms associated with an ongoing decline of brain functioning” (Source: NHS). Common symptoms include; memory loss, mood changes, difficulty communicating, and problems with reasoning. Dementia is often associated with older people, but it is not exclusive – and can develop earlier in life. Given dementia is progressive, people living with dementia must adapt to their changing abilities over time, as must their families. Often, a family member will have to take over some decision-making responsibilities.  

Two common dementias comprise the majority of cases: 

• Alzheimer’s Disease; When a build-up of protein causes damage to brain cells 
• Vascular dementia; When blood vessels in the brain are damaged, meaning sufficient oxygen does not reach brain cells 

Dementia profoundly affects the individual and their family as many will feel pressure and anxiety to provide vital care and support. And family members will know the changes in loved ones are irreversible. Professional advice and guidance is required in order to manage this complex, degenerative condition. Prevalence of dementia makes it one of the most pressing challenges for health and social care services in the UK and here, in Lincolnshire. 

By targeting 12 risk factors across the life course, evidence indicates 40% of dementia cases could be prevented, or at least, delayed. The factors include; educational attainment, onset of hearing loss, suffering a traumatic brain injury, hypertension, reducing excessive alcohol consumption, avoiding obesity, not smoking, depression, increasing physical activity, air pollution, diabetes and social isolation (The Lancet, 2020). 

In the UK, one third of people living with dementia live at home, alone (Alzheimer’s Society, 2013). Loneliness and social isolation is common, particularly in rural areas where transport constraints make it difficult to access support. Helping people to remain connected with others supports good brain health and can improve overall health and wellbeing. 

• Prime Minister’s Challenge on Dementia 2020, Implementation Plan and Review   
• NICE Guidance and Quality Standards 
• National dementia 10 year plan [Due to be published by 2023] 
• The Care Act 2014 introduced a legal right for carers to access an assessment of their needs to determine eligibility for support, such as a support plan or personal budget. The Act sets out a duty for local authorities to provide information and advice on what type of care and support is available. 
• Dementia: a state of the nation report on dementia care and support in England (2013) outlines steps required to address the challenges presented by dementia. 
• Lincolnshire Joint Dementia Strategy 2018-2021  
• Joint Health and Wellbeing Strategy   

In 2019, more than 12,200 people aged 65 years and older were estimated to be living with dementia in Lincolnshire (Source: Alzheimer’s Society). This equates to 6.8% of those aged 65 and over, or 1.6% of Lincolnshire’s entire population (Source: POPPI). Projections to 2040 warn that the number of people living with severe dementia will double (Care Policy and Evaluation Centre, 2019). This trajectory will place significant demographic, health and financial pressures on society. 

Lincolnshire’s recorded dementia prevalence follows a similar trend to the national average, but remains significantly higher. This is reflective of the local age profile, health profile and behavioural factors. 

Lincolnshire County Council (LCC) commissions a community-based Dementia Support Service (DSS), delivered by Lincolnshire Partnership Foundation Trust (LPFT). The service is located with LPFT’s Memory Assessment and Management Service (MAMS) and comprises part of an extended pathway to build resilience, confidence and independence. DSS also provide support for dementia carers and assists advanced care planning and decision making. Co-location of DSS and MAMS allows unhindered transfer to/from secondary dementia services, as individual needs change.  LCC’s commitment to this service is affirmed within the Joint Dementia Strategy 2018-21. 

Family carers residing outside of Lincolnshire are able to access support via health and social care professionals or neighbourhood working – providing the person with dementia is resident in Lincolnshire. Neighbourhood working involves available partnerships agencies collaborating on solutions to health and wellbeing challenges to support people to remain safe and well in their own homes. 

Health and wellbeing outcomes are greatly improved when people with dementia and their carers are supported to access activities that bring enjoyment and provide social contact. Many independent activity and support groups across Lincolnshire are detailed on the Connect to Support website.

Dementia Friendly Communities (DFCs) encourage shared responsibility for ensuring people with dementia feel understood, valued and able to contribute to their community. Grantham, Boston, Louth and Lincoln have all been accredited as Dementia Friendly Communities by the Alzheimer’s Society. The Lincolnshire DFCs and Dementia Action Alliances (DAAs) lead these local initiatives. 

Dementia carers regularly and often report “wandering” – when loved ones suddenly up and leave, unbeknownst to their carer. The Herbert Protocol, provides a record of vital information to support a timely response if someone is missing. 

The Dementia Ambassador Programme, supports independent care providers, offering up to ten minutes support per week to ensure that the principles of dementia care and person-centred practice are integral to everyday practice in care homes. Ambassadors are trained in many topics; 

• Delirium and Dementia
• Oral Care and Dementia 
• Living with Dementia 
• Autism and Learning Disabilities with Dementia 
• Polypharmacy 
• Person Centred Care and Dementia 
• Research and Dementia 

During the development of the Lincolnshire Joint Dementia Strategy 2018-21 (due for renewal) stakeholders identified that: where support is available some find it hard to access; there are differing levels of support for patients and carers before, during and after diagnosis. 

Common themes that people living with dementia and their carers share are: the importance of spending time with others affected by dementia; getting regular exercise; and greater knowledge about the condition. Carers and patients expressed a need for: a more integrated pathway; closer partnership working; and easier ways to find appropriate help. 

Views and experiences have been gathered virtually and in person during the commissioning process for the Dementia Support Service. People with lived experience were included on the service evaluation panel. A key theme was lack of awareness of support among practitioners and public. Increasing awareness of who to contact at appropriate stages of dementia was identified as important to stakeholders, and greater support before and during diagnosis. For this reason, the DSS  has been extended to encompass people with mild cognitive impairment, and upon their initial referral to the memory clinic. 

• Health inequality: From diagnosis to end of life, people living with dementia have been affected significantly and disproportionately by the COVID-19 pandemic, revealing unique needs and a profound reliance on support from health and social care systems. 
• Public knowledge and awareness: The factors that contribute to increased risk of dementia are well known. Support is available for behaviour changes to lower risk. However, awareness of risk factors is low. Increasing public awareness of the benefits of physical activity, moderate alcohol consumption and good hearing for brain health, and supporting people to change their behaviour where relevant, is important for reducing dementia risk across the population. 
• Undiagnosed conditions: A diagnosis of dementia is the gateway to help, information and advice, yet many people with dementia still do not have a diagnosis. Implementing revised diagnosis pathways will greatly improve population health outcomes. 
• GPs have identified: 1) a lack of funding constrains their role in diagnosis and treatment, and 2) difficulty in protected time for dementia specific training, especially against a backdrop of competing priorities for limited training time. 
• Professionals identify a lack of support during end of life care and many other gaps in the current system that warrant further examination. 

In 2021 a system review of dementia services in Lincolnshire (Dementia Services Review – DSR) was carried out on behalf of Lincolnshire CCG, LCC, partner organisations involved in the health and care system. The Joint Dementia Strategy 2018-2021 is due to be renewed in 2022, and the recommendations of the DSR will form the key elements of the new strategy for 2022-2025. 

A joint Dementia Program Board (DPB) is being established from the former Dementia Expert Reference Group (DERG) to progress the service review, with LPFT and the Mental Health Learning Disability & Autism Partnership Group (MHLDA) providing accountability. The Board will: 

• Provide an Integrated Care System (ICS)-wide function for all dementia-related development, data, reporting and governance. 
• Be responsible for planning and delivering the recommendations of the DSR, along with wider dementia-related workstreams (e.g. the upcoming National Dementia Strategy). 
• Develop a 3-year delivery plan, to inform a short, public facing, joint strategy.