Dementia is one of the biggest health and social care issues of our time, with the number of people living with the condition projected to increase rapidly and no clinical treatment to prevent, slow or cure the underlying diseases it is the leading cause of death in England.  Dementia is a progressive condition that can have a devastating effect, not just on the person with dementia, but also on families, carers and wider society.

Dementia is a term used to describe a range of conditions that cause a person's ability to think, remember, and reason to decline over time. It is the loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person's daily life and activities. 

People with intellectual and developmental disabilities can also develop dementia as they age and, in these cases, recognising their symptoms can be particularly difficult. It’s important to consider a person’s current abilities and to monitor for changes over time that could signal dementia.

You will find some helpful observation tools later on in this toolkit or take a look here

"As we age, it’s normal to lose some neurons in the brain. People living with dementia, however, experience far greater loss. Many neurons stop working, lose connections with other brain cells, and eventually die. At first, symptoms can be mild, but they get worse over time." (Source: National Institute on ageing)

It is important to note that Dementia is an umbrella term used to describe a range of neurological conditions affecting the brain that get worse over time.

Click on this link to find out more about each of these types of dementia Understanding Different Types of Dementia.

Delirium and dementia are often confused, as they are both brain disorders that cause cognitive impairment but they have different symptoms, causes, and rates of progression.

There are 21,550 people aged 65 years or above who have been diagnosed with dementia in the administrative County of Essex (NHS England Digital Data). Forecast data provided by the Projecting Older People Population Information System (POPPI) anticipates that, assuming the prevalence remains constant, for Essex as a whole there will be almost 10,000 more people aged 65 and over with dementia in 10 years’ time.

It is also estimated that 15,600 working age adults are living with dementia in Greater Essex. Alongside this are those who are caring for a loved one with dementia, often over 50 hours a week.

There's no certain way to prevent all types of dementia, however there's good evidence to suggest that a healthy lifestyle can help reduce the risk of developing dementia when you're older.

That’s why it is very important that you enable the people you support to stay fit and healthy, inspiring them to take up new activities that will stimulate them both physically and mentally.

A risk factor is something that increases your likelihood of developing a condition.

Some dementia risk factors are difficult or impossible to change. These include:

• age: the older you are, the more likely you are to develop dementia. However, dementia is not a natural part of ageing
• genes: in general, genes alone are not thought to cause dementia. However, certain genetic factors are involved with some of the less common types. Dementia usually develops because of a combination of genetic and "environmental" factors, such as smoking and a lack of regular exercise
• air pollution: research suggests that air pollution may affect the brain and could increase the risk of dementia

Research suggests other risk factors may also be important. These include:

• hearing loss
• untreated depression
• loneliness or social isolation
• sitting for most of the day

Click on the image below to have a look at the 12 risk factors for dementia

This research concluded that by modifying the risk factors, around 4 in 10 cases of dementia could be prevented.

Experts also agree that what's good for your heart is also good for your brain. This means people can help reduce their risk of dementia by:

• eating a balanced diet
• maintaining a healthy weight
• exercising regularly
• keeping alcohol within recommended limits
• stopping smoking
• keeping  blood pressure at a healthy level

Source - Can dementia be prevented - NHS

‘’What do you think you could do, to help lower the risk of any of the people you support, developing dementia?’’

Early onset Dementia, also known as young-onset dementia

People whose symptoms start when they are under the age of 65 are often known as ‘younger people with dementia’ or as having young-onset dementia. This is not for a biological reason but is based on the fact that 65 was the usual age of retirement for many people, historically.

There are important differences in how dementia affects younger people.

These include the following:

• A wider range of diseases cause young-onset dementia.
• A younger person is much more likely to have a rarer form of dementia.
• Younger people with dementia are less likely to have memory loss as one of their first symptoms.
• Young-onset dementia is more likely to cause problems with movement, walking, co-ordination or balance.
• Young-onset dementia is more likely to be inherited (passed on through genes) – this affects up to 10% of younger people with dementia.
• Many younger people with dementia don’t necessarily have any other serious or long-term health conditions.

Someone who is diagnosed under the age of 65 needs to adjust to living with a long-term condition as a younger person. They might be concerned about the effects this will have on their family, relationships, finances and daily life. 

Find out more about this here

Dementia and Down Syndrome

People with Down syndrome have a higher risk of developing dementia, particularly Alzheimer's disease, as they age. This is because they are born with an extra copy of chromosome 21, which carries a gene that produces amyloid precursor protein (APP). Excess APP leads to the buildup of beta-amyloid plaques in the brain, a hallmark of Alzheimer's disease.

Research suggests that people with Down’s syndrome may exhibit changes in personality and behaviour in the early stages of Alzheimer’s disease before memory loss becomes evident. Often, it is small changes in routine and the person’s usual activities of daily life that indicate the possible onset of Alzheimer’s disease. Alzheimer’s disease in people with Down’s syndrome may be associated with the onset of seizures for the first time in that person’s life.

The time course of Alzheimer’s disease in people with Down’s syndrome has been reported to be more rapid than in the general population. Whether this is the case or not is uncertain as it may be a manifestation of the difficulties and delay in making an early diagnosis. By the time the diagnosis is made the dementia may already be advanced.

Source - Ageing and Dementia - Downs Syndrome Association

Down Syndrome and Alzheimers-Disease - further information and help available

What are the symptoms of dementia in someone with a learning disability?

Knowing which symptoms to be aware, of can help the person get the appropriate assessments as early as possible. There are early signs you can look out for, including:

• changes in their daily living skills
• differences in the way they approach daily tasks
• changes to their memory, reasoning or language.

As you are likely to see the person day to day, you are best placed to notice and recognise subtle changes. This could include changes in their mood or the time it takes them to carry out certain tasks. Any changes that you, or the person’s other carers, family or friends notice, can play an important part in helping to spot the early signs of dementia.

If you notice ongoing changes rather than a one-off, tell the GP or specialist learning disability team as soon as possible. They can arrange for the person to have an assessment designed to identify dementia in people with learning disabilities.

These changes can all be caused by other conditions, so it doesn’t necessarily mean that the person you care for has dementia. However, all changes should be investigated by the GP or learning disability team. Think about their personality, their likes and dislikes, as well as their current and past interests and needs.

With the right support, the person you care for may be able to continue with their daily routines, activities and hobbies for some time.

Multiple Health Conditions, Dementia and ageing

As people age, it's common for them to develop multiple co-existing health conditions, in addition to any diagnosed disability. When someone has dementia, managing these multiple conditions can become more complex and challenging.

Common additional conditions with dementia include a variety of physical and mental health conditions. Here are some of the most frequently observed:

Understanding and managing these multiple co-existing health conditions is crucial for improving the overall health and well-being of individuals with dementia.

People with disabilities are already likely to have more than one health condition, maybe for all of their life but certainly even more likely as they age. Add in a diagnosis of dementia and you’ll realise that the management of multiple co-existing health conditions for the people that you support, requires a comprehensive and coordinated approach. 

For those people you support who are unable to say or indicate when things are changing, your staff team’s abilities to monitor, notice and record subtle change and seek professional advice, will be key in ensuring the physical and mental well-being of people with dementia and co-morbidities, ultimately improving their quality of life.

Further information produced by ECC can be found here - Dementia | Provider Hub | Essex

Southend, Essex and Thurrock Dementia Strategy.

"This strategy brings together organisations from across Health and Social Care and the Voluntary Sector to speak with one voice on our aspirations for making Southend, Essex and Thurrock places where people can live well with dementia.

The impact on all those who live with dementia, including friends, family and carers, is clear to all. It is critical that we have a strategy that looks at every element, from the very tough nettle of prevention, through early diagnosis into care, support for carers and provision of accommodation.

This updated strategy for Southend, Essex and Thurrock builds on successes and lessons of the past and will be invaluable as we work together in collaboration.’’

Cllr John Spence, Cabinet Member for Adult Social Care & Health, Essex County Council.

Following consultation with residents in Thurrock and across Southend and Essex, the Dementia Strategy ensures an approach which considers not only the provision of services, but the concerns of those in local communities who are currently facing or aware of the challenges of living with dementia. The strategy seeks to build on community assets and drive development of a high-quality dementia support offer for residents. In doing so, the Dementia Strategy provides an overarching ambition and nine priority areas for delivery through local partnerships and place-based plans focusing on local delivery and place-based action.

Have a look at the full document here and specifically the ‘strategy on a page’ on page 3, for more details about how the priorities have been/will be actioned.

‘What does living well mean to people with dementia?’

Information taken from International Journal of Geriatric Psychiatry | Wiley Online Library

A focus on enabling people to live well needs to consider the way in which people with dementia and carers themselves define and understand living well. Living well will mean different things to different people and expectations will relate to individual circumstances.

For example, what is required to enable someone to live well in the early stages of dementia may be very different in the later stages.

People with dementia, particularly in the early stages, have articulated what it means to live well and tend to have very individualised definitions. These to some extent relate to how they lived their lives before developing dementia and a desire to continue this lifestyle. 

Inclusive Dementia Communities Programme

The Inclusive Dementia Communities (IDC) programme is designed to complement the Essex dementia strategy. The programme and accreditation scheme is an ECC initiative in partnership with the Alzheimer’s Society and provides a free service to Essex organisations.

Inclusive Dementia Communities in Essex have a critical role in supporting the delivery of the mission and commitments to people in Essex articulated in the Southend, Essex & Thurrock Dementia Strategy

The aims of the Inclusive Dementia Communities programme & networks include:

• Building resilience, knowledge and awareness, supporting local people and communities aiming to:
• Strengthening the response of the entire community to dementia by developing the communities’ understanding of dementia and equipping communities with the skills to support people living with and affected by dementia in their community.
• Enabling local communities, businesses and services to be inclusive of people living with and affected by dementia by:

• • building partnerships and activity in communities
  • involving and supporting people to remain physically active and engaged in their local community.
  • empowering people to make decisions and live independent lives for as long as possible.
  • co-delivering, enabling people to live their lives to the fullest in their local community.

Inclusive Dementia Communities Accreditation - Accreditation of local organisations through the Inclusive Dementia Communities programme will be undertaken through a recognition scheme that is proportionate to the size of organisation, service, community or business. Criteria for assessment have been developed in conjunction with people living with dementia. Submission of an aspirational statement or action plan (determined by organisation size) will be reviewed and assessed against the criteria by people living with/affected by dementia and the Inclusive Dementia Community Network. People living with/affected by dementia also undertake site visits and conduct interviews with organisations.

Workforce Training & standards - Dementia

The Dementia Training Standards Framework (DTSF) https://www.hee.nhs.uk/our-work/dementia-awareness/core-skills is an useful resource which details the essential skills and knowledge necessary across the health and social care spectrum. 

A recent update and review included a number of additions regarding food, drink and oral health. The Framework is aligned to Health Education England Tiers 1-3 Dementia | NHS England | Workforce, training and education (hee.nhs.uk) while Skills for Health do not provide resources for Tier 3 training the learning outcomes are included and equivalent training is available and should be included in CPD.

Note the Government intention for proposals to reform the Adult Social Care Workforce Pathway over future years. https://www.gov.uk/government/publications/care-workforce-pathway-for-adult-social-care.

Dementia and completely listening to the workforce

Charles Bonnet syndrome also effects those with sight loss and can often be misdiagnosed as dementia when people describe the hallucinations they see.

What will you do differently, to help the people you support, who are diagnosed with Dementia, to age well?

“What actions do you need to take now, to ensure that your staff teams understand the impact of falls and dementia on someone who is ageing with a disability?”