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If you are wondering if you, or someone close to you, may be living with dementia, it can be a scary time. Knowing where to get information from and what questions to ask can be difficult.
We all have lapses in our memory from time-to-time and this can be affected by several things, but how do you know if what you are experiencing is normal? When should you see a doctor?
There are lots of different types of dementia, and they can all present in different ways and at different ages.
As an umbrella term, dementia can be thought of as a condition leading to loss of memory, language and problem-solving abilities – issues that affect a person’s day to day life.
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By far the most common type of dementia is Alzheimer’s disease. It is generally the type of dementia people are most familiar with. Other types include vascular dementia, dementia with Lewy bodies and Pick’s disease. You may even have a mix of a few of these different types.
Your brain relies on a set of pathways and chemicals to help you function and think. In Alzheimer’s disease, a build-up of abnormal protein in these areas, known as plaque, can form. This limits the brain’s ability to function and create memories. Also, the level of hormones in your brain which are used to transmit signals can be low, which compounds the problem.
Alzheimer’s disease is generally diagnosed in people over the age of 65. although it can be diagnosed at an earlier age, these forms of Alzheimer’s are atypical and usually more severe.
Vascular dementia is the next most common form of dementia. Whereas in Alzheimer’s, people tend to have difficulties with memory as the predominant initial symptom, in vascular dementia, people might notice that they aren’t focusing as well, or are thinking more slowly.
Again, it is rare for people aged under 65 to be diagnosed with this. All forms of dementia are more likely as you grow older.
Also known as Lewy body dementia, around 10-15% of people diagnosed with dementia will be suffering from dementia with Lewy bodies.
Like in Alzheimer’s disease, Lewy body dementia is caused by an abnormal build-up of protein in the brain. The difference is that these deposits of protein affect different areas and are called Lewy bodies. They can sometimes be seen on MRI scans, or specialised CT scans called a SPECT scan.
There is a strong link between Lewy body dementia and Parkinson’s disease. People who have Parkinson’s disease are far more likely to develop dementia, which presents very similarly to Lewy body dementia. Whether you are diagnosed with Parkinson’s disease, or Lewy body dementia will depend on how your symptoms first started.
If your symptoms began with a tremor and slow movements and memory loss developed a few years later, then you will probably be diagnosed with Parkinson’s disease. If, however, it is the other way around, Lewy body dementia is more likely. Although memory is frequently affected, this tends not to be the predominant initial symptom.
Pick’s disease is also known as frontotemporal dementia. It is an uncommon type of dementia that tends to affect people at a younger age. Most cases are diagnosed in people aged between 45 and 65, whereas for other forms of dementia, it is unusual for it to affect people under the age of 65.
There is a genetic link with Pick’s disease, with about 1 in 8 people who are diagnosed having a family member who already has it.
There are genetic tests that can be done to try to get an idea about your risk of developing the disease, but if you are concerned about this, you should discuss it with your doctor. Tests can never tell you for sure whether you will develop the disease, or not, and should only be undertaken with a full understanding of their limitations with access to counselling if needed.
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Symptoms start mildly and progressively worsen over time. The symptoms a person may initially experience may differ from other people’s however, some symptoms are more common. Some things which you may notice are:
Over time, these symptoms worsen, and it may be that people struggle in conversation and find it hard to follow along, as they forget what has already been said.
People with Alzheimer’s also eventually lose their orientation and can lose track of time, too.
Eventually, Alzheimer’s will progress to the point of someone being generally confused all of the time.
Other symptoms of a more advanced disease are:
Some of the more common symptoms are:
Someone who is suffering from these symptoms may also have some of the symptoms listed previously for Alzheimer’s disease, as it is relatively common to have both conditions.
Often a predominant symptom is a change in behaviour. People that have Pick’s disease can be impulsive and act inappropriately. You may notice a lack of hygiene, or that someone seems to become selfish, or mean.
Other symptoms overlap with the different types of dementia already listed and include:
As we age, our memory naturally declines. We may be more forgetful, or be less able to multi-task, or perform complex tasks. People tend to notice these changes around the age of 50, and this is entirely normal.
It can be challenging to know when you should be worried about these symptoms. If you are forgetting things relatively infrequently, for example, losing your keys once a week, but are otherwise well, then this is probably normal. If you are finding that you are struggling with things daily that you would not usually, like misplacing things, or paying bills, then you should speak to your doctor.
The Alzheimer’s Society is a UK based charity dedicated to helping people with all forms of dementia. You can find a comparison of what to expect with healthy aging and the symptoms you might get against symptoms you might get with dementia on this link.
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When you see your GP with symptoms that might suggest dementia, they will first start by taking a detailed history of your symptoms and do an examination. Many other conditions can cause symptoms like those experienced in dementia, notably mental health conditions like depression.
If your symptoms are a bit more advanced, your GP may be able to make the diagnosis of dementia without any further testing. It is likely however, that you will be referred to a specialist clinic. This may be a neurology clinic, or a memory clinic, depending on the services in your local area.
Blood tests will only be used to rule out other conditions that could be causing your symptoms, as there are no specific blood tests for dementia.
Some tests which may be considered are thyroid function and vitamin B12 tests. This is to rule out a thyroid condition, or malnutrition, which could be causing loss of memory, or difficulties in walking.
You may also have a scan of your brain. There are several different types of scans, but most commonly, a CT, or MRI head scan would be ordered. These can show vascular changes in the brain, tumours, and other things that could either point to dementia, or something else causing your symptoms. They may also be completely normal, but this does not necessarily mean that you are not suffering from dementia.
In the late stages of Alzheimer’s disease, or Lewy body dementia, an MRI scan may show the abnormal deposits of protein in the brain, which are causing the problem. Again, a normal scan does not mean that you do not have these conditions.
Unfortunately, no one test can definitively say if you have dementia, or not. Your doctor will use information from your history, the examination and any further tests to make a diagnosis.
All types of dementia are progressive diseases. This means that they will continue to get worse once you have been diagnosed. The average life expectancy for someone who has been diagnosed with dementia varies depending on the type, but generally it is around ten years from the time of diagnosis.
As the disease progresses, people are likely to need help with everyday tasks. This may start with more complex tasks, such as dealing with finances, but will progress to needing help with almost all everyday tasks.
People tend to think of dementia as a chronic illness that a person just lives with through old age. While dementia can progress very slowly, it is a disease that invariably gets worse over time and is fatal.
People with dementia will become frailer as the disease progresses and this increases the likelihood that they will develop severe infections, or other conditions which may kill them. Beyond this, dementia will eventually lead to loss of muscle tone and difficulty in eating. This is one of the signs that a person’s dementia has progressed to being end-stage.
Many people who have been diagnosed with dementia live for many years post diagnosis with a very good quality of life. It is impossible to know how quickly the disease will progress in different people.
Dementia can affect anyone, no matter what precautions you take. There are some things you can do which can help to minimise your risk. These include:
There is no specific treatment for dementia. Some medications can be prescribed in moderate to severe dementia, which can help with some symptoms, such as memory loss. Typical examples would be Donepezil, or Memantine. These can only be prescribed by a doctor. Common side effects include nausea, diarrhoea, headache and sleepiness.
Other treatments can also be prescribed for specific symptoms. Medications for low mood, or tremor, would be good examples.
Physiotherapy may also be helpful, and there are a range of alternative therapies that you could also consider.
Knowing that dementia will progress means it is important to think about how you want to manage your symptoms in the future, for when you are unable to make these decisions for yourself. There are a few things you should start thinking about and discussing with those close to you, or your doctor.
If you were no longer able to pay your bills, is there someone who you trust who you would like to do this for you? Perhaps you would want your money to be spent in very specific ways, or would like to ensure that your pets are taken care of, for example.
It’s important to make decisions like this while you are still able to do so. One way to do this is to appoint a financial power of attorney. This is someone, or more than one person, who you chose to deal with your finances when you are no longer able to make decisions for yourself. They can do things like pay your bills, or use your money to buy your household groceries etc.
For advice on help with health costs that you might be entitled to visit the Citizen’s Advice Bureau website.
Would you prefer to be cared for at home, or in a nursing home? Is there a specific area where you would like your nursing home to be located? Do you have any strong views about not wanting to be resuscitated, or on receiving certain types of medical treatment? There will come a time where you will be unable to voice your wishes in these circumstances and you should prepare for this.
Much like a financial power of attorney, you can also appoint someone who can make health decisions on your behalf. The application process is the same as that for appointing a financial power of attorney. You can nominate the same person to be both, or different people for each.
Another way to do this would be to create a living will, or an advanced directive. Instead of appointing someone to make decisions for you in the event of you not being able to do so, this is where you expressly set out in a legal document what treatments you would not want to have in different scenarios. These are legal documents, and as such, need to be drafted in a specific way. For more advice on how to get started with a living will, visit the Age UK website.
It can be useful to anticipate issues which may arise in the future and attempt to change things in the home to help with this.
As dementia progresses, it is likely that the person suffering with it may become frailer and with that may suffer from a number of issues. Things like making sure that there are sleeping and toilet facilities downstairs may be invaluable in the future. If this isn’t possible, you may want to consider a stairlift. Other simple things to consider are minor modifications, such as bathroom grab rails.
Some of these adaptations may be available on the NHS. If you are concerned about your living arrangements, you should speak to your GP who can arrange a home assessment.
The Alzheimer’s Society has a directory for local services for people with dementia. The society also operate a helpline for people who just want to talk to someone.
Dementia UK is another charity dedicated to helping people with all kinds of dementia. They also operate a helpline that people can contact for further information and support.
The NHS also offers support in many areas, you can visit their website here.
CT (Computed Tomography) – this is a scan which uses radiation to take pictures of the inside of your body. It can be used in dementia to rule out large brain tumours, or strokes
Hallucintations – this is when someone is seeing, or hearing things, that aren’t there
MRI (Magnetic Resonance Imaging) – a scan which uses a large 'magnet' to take pictures of the inside of a body. It takes better images of the brain than a CT scanner, and can show smaller brain tumours and strokes better
Physiotherapy – a type of treatment where someone is given specific physical exercises, or treatments, to help with a medical condition
Power of attorney – the legal appointment of a person that can make decisions for you in the case of you no longer being able to make decisions for yourself. This can be either financial decisions, or medical decisions
SPECT (Single Photon Emission Computed Tomography) – this is a specialised type of CT scan which can be used to show the blood flow in different parts of the body. In the brain, this can help to identify areas that aren’t getting good blood supply, such as in strokes, or vascular dementia