Time to provide better support to people with dementia
The Office of National Statistics (ONS) reported in late 2016 that dementia is now the leading cause of death in England and Wales. With this in mind, Rosie Runciman, co-founder at The Sound Doctor, wants people to be aware that quality patient information about the condition, in a format that’s easy to follow and act upon, is available.
Approximately 9.25 million people are estimated to be living with dementia across Europe.*
These figures are expected to explode in the coming decades. Experts expect dementia to affect 135 million people globally by 2050, with care costs reaching $1 trillion by 2030.**
One way to help alleviate this problem is to give people with dementia – and those who care for them – as much information and support as possible about the condition and how to live well and maintain their quality of life.
By helping people understand some of the common symptoms and behaviours of dementia and how it is progressing in their individual case, we can achieve two important objectives.
Firstly, we can reduce the fear, anxiety and worry that people experience when they are first diagnosed with dementia and empower them to lead enjoyable, fulfilling lives by tailoring their lifestyle to their diagnosis.
In so doing, we can achieve the second objective: to help them maintain their independence for as long as possible and ensure their families have access to the best possible support when they need it most.
We can also help reduce the number of people we expect to develop dementia. The Medical Research Council Cognitive Function and Ageing Study (CFAS), conducted over a 20-year period, suggests the predicted prevalence of dementia in the UK is lower than was once anticipated. In its first phase, CFAS predicted that 8.3 per cent of the UK population would have dementia by 2011. However, after new strategies were introduced following publication of the research, the actual figure in 2009 was 6.5 per cent.***
Types of dementia
Although the biggest risk factor for developing dementia is getting older, dementia is not part of normal ageing. It occurs when part of the brain is affected by a disease and usually occurs in people aged over 65.
There are many types of dementia. Alzheimer's disease, which changes the brain’s structure and chemistry, is the most common. Other types include:
• Vascular dementia, where the supply of oxygen to the brain fails and brain cells die. This can happen as a result of stroke
• Dementia with Lewy bodies. Lewy bodies are minute structures which, when they develop in the brain, cause the brain tissue to degenerate
• Fronto-temporal dementia, which, as its name suggests, affects the front of the brain. As a result, this form of the disease initially has a greater impact on personality than on memory. Fronto-temporal dementia usually affects people in their 50s and 60s
Some unrelated conditions, such as multiple sclerosis,and Huntingdon’s disease, can increase a person’s risk of dementia. Up to 80 per cent of people with Parkinson’s disease develop 
dementia. Cognitive impairment can also be a symptom of HIV and AIDS, while mild cognitive impairment is a term used to describe memory problems where no form of dementia is present.
The symptoms of dementia
Dementia is generally progressive, which means that the symptoms get worse over time. However, it is important to remember that no two people are affected by dementia in the same way. For this reason, it is inadvisable for anyone newly diagnosed with dementia to look at others with the condition and assume their experience will be the same. The disease progresses in different ways, in different directions and at different paces with different people. The symptoms are also wide-ranging.
This means, with the right support and information, many people with dementia can live well and independently for a long time.
The most common symptoms of dementia are problems with memory, difficulty in concentrating and thinking things through, being confused about time or place and having problems with language and communication. These symptoms can vary according to the type of dementia a person has.
Dementia usually affects the short-term memory first. So, in the early stages of the disease, people forget things that happened recently but can often remember things from long ago.
People with dementia may have difficulty finding the right word or struggle to follow a conversation. They may repeat themselves and appear confused in their conversation.
Diagnosing dementia
It's a difficult decision to make and a difficult conversation to have. But seeking a professional opinion as soon as the first signs of dementia appear is highly recommended. There’s always the possibility that the symptoms are the result of some other condition. If they are not, an early diagnosis of dementia opens the door to wide-ranging help and support. Tablets, for example, that alleviate symptoms and slow the progression of dementia, work best when taken in the early stages of the onset of dementia.
The process of diagnosing dementia can take some time. Doctors first want to rule out other, treatable, causes of the symptoms. For this reason, they ask patients about their symptoms, carry out blood tests and conduct specific memory tests and exercises. The process usually also involves a brain scan. This can reveal the presence of dementia and, in many cases, the specific type.
Post diagnosis
Once diagnosed, patients and their carers may be entitled to some benefits or allowances. In the UK, for example, the main benefits are Disability Living Allowance, Personal 
Independence Payments (for people under 65), Attendance Allowance (for people over 65) and Carer's Allowance. Some also qualify for a reduction on their local tax, known as Council Tax.
Patients should also contact the relevant charities in their countries, as these will help them find out what benefits they’re eligible for and what support groups and networks exist in their neighbourhoods. Key charities in the UK include Age UK, Dementia UK, Citizens Advice Bureau and the Alzheimer's Society.
A diagnosis of dementia can come as a big shock to the patient and the people close to them. However, it’s key to bear in mind that, at this stage, nothing has changed. The patient can continue to enjoy all the activities they’ve enjoyed to date.
Planning
When the dust settles on the diagnosis, it’s a good idea for patients to think about planning for the future. In financial terms, this could be as simple as setting up direct debits for paying regular bills, taking advice about bank and savings accounts, mortgages and pensions and writing or updating a will.
Assigning Lasting Power of Attorney (LPA) to a trusted friend or relative is also worth considering. As the illness get worse, a person with dementia will experience increasing memory and speech problems so they may be unable to make decisions or voice their wishes about their care. LPA involves the person with dementia, while they are able to do so, naming a trusted person to make decisions on their behalf at the point in the future when they are unable to do so. In the UK, there are two types of LPA, one for financial and property affairs and one for health and welfare.
With the big decisions made, there’s no reason why people with dementia shouldn’t get on and enjoy their lives. Staying active, physically and mentally, helps to keep the condition under control, as does eating well. It’s important too, to spend time with friends and family. After all, there’s still plenty of life left to enjoy and people can live happily and independently, often in their own homes, for many years with dementia.
Dementia charities can be very helpful in guiding people through their journey with dementia. Doctors, care managers and, where available, local memory clinics can also provide practical support, and there are voluntary groups in most areas that people can join.
Caring for someone with dementia
Caring for someone with dementia can be increasingly demanding as the disease progresses. Carers looking after, or living with, people with dementia have to deal with mood swings, changes in personality and behaviour and difficulty in communicating on a daily basis. Other challenges include:
• Providing help with everyday physical tasks
• Helping with mail, correspondence and personal paperwork
• Keeping the person with dementia’s interest up in their hobbies and social life
• Ensuring their diet remains healthy and that they keep eating properly
• Helping them sleep
• Helping with personal hygiene
• Dealing with incontinence
For this reason, governments and healthcare providers have a vested interest in providing quality support and information to carers. After all, if the carer is well, the person with dementia is in good hands.
We need to assure carers that that help is at hand for them, too and that there are people available to support them. Doctors, local dementia support groups, even close friends or family members can provide a valuable outlet for this.
Caring for anyone with a long-term condition is tiring. It can put a huge strain on the carer’s own physical and psychological wellbeing. And, they may have, or develop, conditions of their own that require ongoing treatment. Respite care is a vital part of the support we should be providing to people who care for others with dementia.
On an informal basis, respite care offered by friends, relatives and neighbours can be hugely valuable. Where this type of support is unavailable, carers need access to good quality home care agencies or local authority services. Meeting a new carer, or travelling to a new place to be cared for, can confuse the person with dementia. Again, this is an area that carers need to be given guidance on.
In the UK, calls for improved support for people with dementia and those who care for them are getting louder. Martina Kane, Senior Policy Adviser at the Alzheimer's Society, says:
“It is essential that people have access to the right support and services to help them live well with dementia and that research into better care, treatments and eventually a cure remain high on the agenda."
Professor Louise Robinson, Professor of Primary Care and Ageing at Newcastle University Institute for Ageing, agrees. She said:
“Patient information is critical for anyone living with or caring for people with dementia.”
In the 21st century, nobody, whether a patient or a carer, should have to go it alone with dementia.
** http://www.bmj.com/content/350/bmj.h3029