Ever since 2012, September has been World Alzheimer’s Month. This year on September 21 which is World Alzheimer’s Day, the theme is ‘Let’s talk about dementia’ and an international campaign is being run to raise awareness and challenge the stigma that surrounds the disease.
Since there is little or no understanding of dementia, the stigmatisation and misinformation about the disease is a global problem. Hence, it is important to know the history and significance of the day and how you can provide support.
What is dementia?
Dementia is a term used to describe a group of conditions that cause damage to brain cells. This damage means a person’s ability to remember, think, speak and to do everyday things will change. As dementia progresses, the changes become greater, and the person will need more help. There are many conditions which cause dementia. Alzheimer’s is the most common cause. Vascular dementia, Lewy body dementia and Fronto-temporal dementia are other causes. Sometimes a person may experience a mix of two dementias and this is called mixed dementia. Some people may be diagnosed with dementia and it may not be possible to confirm if it is Alzheimer’s or another cause of dementia.
What are the early signs of dementia?
Often the early signs of dementia may be difficult to detect. Some people experience changes in their short-term memory early on, for others changes to mood or to language may be the early signs. Each person’s experience with dementia is unique. In general, early signs and symptoms can include:
- Memory loss, particularly for recent events
- Problems with language, difficulty finding the right word
- Changes in mood and behaviour
- Becoming confused in familiar surroundings or situations
- Difficulty in following conversations, TV programmes or reading
- Difficulty managing money and everyday tasks
- Difficulty solving problems or doing puzzles
- Loss of interest in hobbies and pastimes, lack of initiative to start something or go somewhere.
- Repeating a question or story several times without realising
Most people will experience a number of these signs, and they will find they are having increasing difficulty over time. In general, signs and symptoms emerge gradually. This can be difficult for both the person who is experiencing changes and for their family and friends.
Why is a diagnosis so important?
Early diagnosis is important because:
- There are other, often treatable, causes of memory loss and confusion, a diagnosis is important to establish what the next steps are
- There are supports and services which can help you to live well with dementia, a diagnosis means you can begin to access these
- There may be treatments and medications that can help to manage symptoms
- It allows the person with dementia and their family to make plans for the future and consider their legal and financial arrangements.
How is a diagnosis made?
There is no one test for dementia. Rather the diagnosis involves a range of assessments and tests. This can mean that a diagnosis of dementia can take time, particularly in the early stages. A diagnosis of dementia usually begins with a General Practitioner, GP. The doctor will review medical records and build a picture of the changes that a person is experiencing. The doctor will generally begin an assessment by ruling out other possible causes of the signs and symptoms a person is experiencing, this may involve running some tests including blood and urine tests, some memory and thinking tests as well as an overview of general health.
The doctor may be able to diagnose or they may think a further assessment is needed. GP’s can refer people to a consultant who specialises in diagnosing dementia, such as a geriatrician, a psychiatrist of later life or to a memory clinic. If you are under 65, you will be referred to a neurologist or a memory clinic. If you feel a referral to a specialist would be helpful you can discuss this with the GP. The consultant will conduct a full assessment to try to establish the cause of the symptoms. They usually work with a specialist team and you may see a number of people from this team. This process usually includes blood tests, a full history of family medical background, a physical examination, and an assessment of memory, thinking and activities of daily living. A brain scan (CT, MRI) to identify any changes taking place in the brain may form part of the assessment, but this may not be required for every case.
The doctors will work directly with the person who is experiencing changes. The doctor may also ask family members to talk about any changes they see or any concerns they may have. After the assessment, the consultant will draw together all the results and determine what is happening. It may be that the assessment is repeated at a later date in order to identify further changes and confirm a diagnosis.
Tips for working with doctors during a diagnosis
It can be helpful to make a note of the changes causing concern or questions you have before an appointment to help you to talk to the doctor about them. Some tips include:
- Keep a diary to help to capture changes that are causing concern
- Ask family members or friends if they have noticed any changes, they may be able to help you write down the changes you both have noticed
- Write down questions you have and ask the doctor to explain words or phrases you do not understand
- Some people bring a family member or friend with them to the appointment.
What if a diagnosis is made?
A diagnosis of dementia comes as a shock, no matter how much it is expected. It is hard for everyone concerned and reassurance and support are vital. The most important thing is to try to be positive and to know that you are not alone. There are people you can talk to and supports and services that can help. Your GP will be an important person to support you to live well with dementia. You can talk to them about your dementia, about any medications and treatments you may be prescribed, about areas such as driving and about any symptoms that may emerge.
Every illness is terrible news but the confirmation of a loved one suffering from Alzheimer's is especially tough because it's a slow progression and it's an illness which currently has no hope. If you are a carer, then this World Alzheimer's Day, we salute you.
You can also contact The Alzheimer Society's confidential helpline for information about dementia, about areas such as driving and legal and financial planning and about local supports and services. Call: 0333 150 3456 of visit: www.alzheimers.org.uk