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Living With Dementia

Picture of Andrew Bellingham

Andrew Bellingham

Pharmacist | 20+ Years | BPharm | Dip Clin Pharm

According to the NHS, there are over 850,000 people in the UK with dementia, with the condition affecting 1 in 6 people over the age of 80, and 1 in 14 over 65. It’s a very common condition, but many don’t know that much about it until there is a diagnosis.

It’s important for all of us, whether we’re personally affected by dementia or not, to learn about it. Not only would we be more prepared if we were to be diagnosed, we will also be able to better support those in our communities. Many people around us are facing a number of challenges due to dementia, and it’s essential for us to understand what these challenges are and what we can do about them.

Along with Alzheimer’s Research UK’s Dementia Research Infoline, we would like to help you understand what dementia is, how to identify it, and how to live with it.

What is Dementia?

Dementia is a general term given to a group of symptoms, or a syndrome, that affect the functioning of the brain. Dementia is caused by diseases that are progressive, meaning that there is a decline in brain function over time. These can include memory loss and trouble with thinking or communicating, and more.

Types of Dementia

While Alzheimer’s disease is the most common form of dementia, and therefore the most heard of there are other types as well. Unfortunately it is possible to have more than one type of dementia at the same time, which is sometimes referred to as mixed dementia.

Common types of dementia include: Alzheimer’s disease, frontotemporal dementia, vascular dementia, dementia with Lewy bodies, etc.

 

Causes of Dementia

Dementia happens when brain cells are damaged or die. How this is caused varies with the type of dementia.

Risk Factors & Preventative Measures

Extensive research is currently being done, but at the moment there is no way to completely prevent dementia. What you can do, however, is try to have a healthy lifestyle. This involves eating a healthy diet, exercising regularly, not abusing alcohol or drugs, and maintaining a healthy weight. Research so far has shown that healthy living reduces the risk of dementia, as well as decreasing the risk of developing diseases that then in turn carry a risk of developing dementia. It would also be beneficial to ensure that you keep your brain active and engaged, even through puzzles.

Those with a higher risk of developing dementia are those over the age of 65, as well as those that have:

  • Diabetes
  • High blood pressure
  • Had a stroke
  • High cholesterol
  • Untreated depression

Symptoms of Dementia

The variety of dementia means that the symptoms can vary from condition to condition, as well as person to person. However there are symptoms that most will experience early on, usually before a diagnosis. The first signs of dementia commonly include:

  • Memory loss
  • Difficulty communicating
  • Difficulty concentrating
  • Mood changes
  • Confusion

When dementia becomes advanced, these problems can become quite severe and can become accompanied with more physical problems such as bladder incontinence and mobility issues. This could mean the person needs constant care.

Look into the symptoms for each of the common types of dementia

Getting a Diagnosis

It is best to speak to a GP if you are over the age of 65, and find yourself exhibiting some symptoms of dementia. There is no cure for dementia yet, but there are treatments available that can help alleviate some of the symptoms. Early diagnosis gives these treatments the best chance of working. It will also help have the person diagnosed, as well as those around them, prepare for what may happen.

Dementia Tests

When you see your doctor, they will ask you about the symptoms you are concerned about, as well as your general health. If they suspect dementia, or if you enquire about dementia, they will also try to gauge the difficulty you may be having carrying out your everyday activities.

If there is a possibility that there have been changes to your personality, it may be helpful to have someone close to you there to explain this to the doctor.

As there are a number of dementia symptoms that can present as a result as different conditions or circumstances, your doctor will arrange a number of tests to rule out other causes before progressing further. These tests can include a physical examination, blood tests and a urine test. They will likely do a cognitive or memory test as well.

Once these tests have allowed the doctor to rule out other causes for the symptoms you are facing, or if they are not sure, they may then refer you to a dementia specialist. They may carry out further tests including a brain scan and memory tests.

Dementia Treatments

The treatment you receive for dementia will depend on the type of dementia you have, how far developed the condition is, and your symptoms. Most available medicines are used to treat Alzheimer’s, but they can sometimes help treat people with dementia with Lewy bodies too. Aside from this, there are a number of treatments available that are used to treat specific conditions that coexist dementia, or are developed from dementia. These can range from medication, to therapy and cognitive rehabilitation.

Living With Dementia

A dementia diagnosis can be very upsetting for the person diagnosed and those close to them. It’s recommended that you try to come to terms with what this means for you. You can speak to your doctor about all the support available to you.

It’s important that those diagnosed with dementia at an early enough stage where they are still able to understand what is happening, create an Action Plan. The purpose of this is to ensure that you have as much control as possible over what happens to you in the future. This can include setting out a care plan, writing a will, choosing a Lasting Power of Attorney, and deciding what should be done in different situations, should you not be able to communicate your wants in the future.

Many people live well for several years with dementia. While you may be concerned about what may happen in the future, it’s important to remember the things you can do, and to be aware that dementia is different for everyone. Some steps you can take to help you live well and/or cope with dementia are:

  • Socialise often
  • Exercise regularly and eat a healthy, balanced diet
  • Have regular check ups with your doctor
  • Look after your sleep cycle
  • Have a regular routine
  • Inform people around you of your diagnosis
  • Reduce the number of things you need to remember – e.g. set up direct debits, use a pill organiser, etc.

Dementia Research

Alzheimer’s Research UK is the UK’s leading dementia research charity. As well as funding biomedical research to understand more about the causes, prevention, diagnosis and treatment of dementia, the charity also provides an information service for the public and those affected by dementia. 

The service, called the Dementia Research Infoline, is there to answer any questions you have about dementia or about dementia research. The friendly and supportive team can help with the following:

  • Answer questions about dementia, dementia symptoms, available treatments or questions you have about how to get a diagnosis.
  • Are you worried about your memory and want to know more?
  • Do you have questions about genetics, or about how you can reduce your risk of dementia?
  • The service also provides over 15 different free health information booklets about dementia, which you can request via telephone, email or via the website here https://www.alzheimersresearchuk.org/supporter-orders/?tab=information-about-dementia
  • Are you interested in the latest dementia research? Or do you have a question about a recent dementia news story?
  • Do you want to take part in dementia research as a volunteer?

The Dementia Research Infoline can be contacted by telephone on 0300 111 5111. Lines are open Monday to Friday, 9-5pm. Calls to 03 numbers cost no more than calls to 01 or 02 numbers, and are included in most call packages. If you are calling outside of opening hours you can leave a voicemail, and staff will respond within 3 working days. You can also email your questions or enquiry to infoline@azlheimersresearchuk.org

If the service is unable to answer an enquiry directly, they can signpost you on to other trusted and relevant organisations.

You can also find lots of helpful information about dementia on the Alzheimer’s Research UK website here https://www.alzheimersresearchuk.org/dementia-information/

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