What is Alzheimer’s disease.

There is no one test used to diagnose a type of dementia. Rather, the diagnosis involves a range of assessments and tests and this can mean that confirming a diagnosis can take time, particularly in the early stages.

A diagnosis of dementia usually begins with a General Practitioner, GP.  It can be helpful to make a note of the changes causing concern before your visit to help you to talk to the GP about them. Perhaps keep a diary to help you to do this.

The GP will generally begin an assessment by ruling out other possible causes of symptoms you are experiencing; this may involve running some tests including blood tests and memory tests as well as an overview of your general health. Some other possible causes of the symptoms you are experiencing include thyroid disorders, vitamin deficiency and side effects of some medication.

The GP may refer to a consultant who will conduct a full assessment to try to establish the cause of the symptoms.   You can download our factsheet, Who’s who in Dementia care  to understand the different professional involved in the dementia journey. If you want a physical copy, you can ring our National Helpline on 1800 341 341 and we can post it out to you.

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,
• An assessment of memory, thinking and activities of daily living,
• A brain scan (CT, MRI) to identify any changes taking place in the brain which 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.

What if a diagnosis is made?

A diagnosis of dementia can come 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.  You can contact our National Helpline on 1800 341 341 for information on services and supports available . You can also read our factsheet Early symptoms and diagnosis.

A range of Alzheimer’s drug treatments can help some people. They do not cure dementia but can help with some of the symptoms. For some people, the drugs can help to slow down the progression of the dementia for some time. These treatments are not successful for everyone, so discussing all options with your doctor is essential.

The main drug treatments for Alzheimer’s disease are

• Donepezil (Aricept)
• Rivastigmine (Exelon)
• Galantamine (Cognex)
• Memantine (Namenda)

Generally, donepezil, rivastigmine and galantamine are used for people with mild to moderate Alzheimer’s disease. Memantine is usually prescribed to people in the middle to later stages of the disease. These are the chemical names for these drugs; the prescription may have a trading name also on the script. The drug trade names are listed above in brackets alongside the chemical name. Ask the doctor if you are unsure. These drugs may also be used for people with Lewy body dementia and, in some cases, for people with vascular dementia.

Drugs for behavioural symptoms and depression

People with dementia may be prescribed a range of medications to help relieve behavioural symptoms and depression. These medications can include

• sleeping tablets
• tranquillisers
• anti-anxiety drugs
• antipsychotic drugs
• anti-depressants

Not every person with dementia will need these medications; there are other methods to help manage these symptoms. Some people may need medication for a short period.

A decision to prescribe these medications should involve a full assessment of the person with dementia, their physical health and well-being. A Psychiatrist of Old Age may be introduced to carry out this assessment and help manage the symptoms. Areas such as unrecognised pain, eyesight, hearing and dental health should be explored to see if there are any other causes for the behaviour. It may be possible that the behaviour results from something in the environment triggering a response.

Talk to the doctor about daily routines, likes and dislikes so they can build a complete picture and help to identify what is triggering the behaviour. There are lots of ways to manage symptoms and behaviours that may emerge, and medication is one option which may or may not be suitable.

Managing medication

With all medication, it is important to understand what drugs are being prescribed, why they are being prescribed, what benefits they are supposed to bring, and what side-effects may emerge. Where possible, it is important for the person with dementia and a trusted person to discuss this with the prescribing doctor. In 2019 the Department of Health launched a national clinical guideline for the “appropriate prescribing of psychotropic medication for non-cognitive symptoms in people with dementia”. A guide for people with dementia was published and is available HERE

If a person with dementia is unable to participate in a discussion about medication, it is vital that their family or carer understand what is being prescribed and why. Talk to the doctors and ask questions. Ask them to provide information about the medications and to write out dosages and times to take them. It is also important to give doctors feedback on any changes experienced when taking the medication, both positive and negative.

You can talk to your doctor or pharmacist about issues that may arise.  Your pharmacist may be able to provide the medications in a blister pack or a medication box which arranges medication by day and time or log onto www.dontforget.ie. Building a relationship with a pharmacist can be helpful. You can also get electronic blister packs, which are set to a timer, and only open up at certain times of the day. For more information contact your local Memory technology resource room. click HERE or you can contact our National Helpline on 1800 341 341 and our Helpline team can provide you with details of your local resource room. The HSE have created a leaflet for people to write their medication on. You can bring this to any medical  appointments you may have. You can view the leaflet HERE 

It may also be helpful for another family member or friend to know the medication routine and the name of the doctor and pharmacist you work with.

Early Stage

In the early stages of dementia changes are slight and it is possible to continue to do lots of things. This typically means a person may:

• Forget things easily or repeat things frequently
• Experience problems with language, such as appearing to be stuck for words or losing track of a conversation
• Find new situations or places confusing
• Show poor judgement or find it hard to make decisions
• Lose interest in other people or activities
• Be unwilling to try new things
• Experience low mood, may become anxious or withdrawn
• Feel frustrated or angry

Many people in the early stages of dementia engage in activities they enjoy but at times they may find it hard and may need to rest more frequently.

As dementia progresses, changes are greater and a person will need more support to help them to manage day to day living. As a person finds it harder to do things, they may lose confidence and withdraw or be upset. Others may feel frustrated and angry and be argumentative or quick to lose their temper.

During the middle stage a person may:

• forget recent events completely
• find conversations, television or reading difficult to follow or confusing
• get lost easily, even in familiar places
• find bathing and dressing difficult or confusing
• need reminders to eat, drink and take medication
• find meal preparation and managing money very difficult
• believe things are real even when they are not
• feel restless or agitated
• confuse time and experience difficulties with sleeping

The symptoms and behaviours that can occur during this stage are difficult for both the person with dementia and their families. There are supports and services to help and strategies for coping. you can contact our National Helpline on 1800 341 341 for advice and support

Late Stage

During the late stage of dementia, a person will need increasing amounts of support and will gradually become dependent on others for nursing care. A person will become increasingly frail and may walk unsteadily; they may need a wheelchair or be confined to bed. During this stage the ability to fight even simple infections is low.

Typically, a person may:

• have difficulty recognising people, although there may be flashes of recognition
• experience gradual loss of speech
• have difficulty eating and sometimes swallowing
• experience incontinence
• appear restless and seem to be looking for someone or something

While a person with late stage dementia may have difficulty communicating, they will often respond positively to affection, a smile, and a soothing voice. Music, scent and hand massage can bring comfort and enjoyment. for more information download our factsheet Understanding late stage dementia. You can also  ring our Helpline on 1800 341 341 and we can post one out to you.

These tips may make living with Alzheimer’s disease easier.

• Find out about local dementia services like day care, day care at home, social clubs and Alzheimer cafés by contacting our National Helpline on 1800 341 341 or by emailing [email protected]
• Try to keep to a daily routine to provide familiarity and stability.
• Help the person remain socially connected by continuing their current activities or trying new ones
• Ensure the person carries a form of identity with details of their diagnosis in case they are lost or need assistance outside the home – this could be sewn into a coat or bag.
• A Sunflower lanyard from the Hidden Disabilities store or a similar badge/ID card can be helpful to alert members of the public that the person may need support
• You can contact our National Helpline for our Living with Dementia cards. You can put next of kin details on it show it in shops and if you get disorientated or confused about where you are.
• Look into assistive products that make daily living easier, such as medication organisers, dementia clocks and personal fall alarms. you can visit a memory technology resource room to see what assistive technologies are available.
• Take a tour around the person’s home to identify possible hazards – read our information on making the home safe and comfortable
• Encourage the person to carry on with their daily activities as far as possible to help them maintain their skills and independence.
• Be realistic about your ability to care for the person – in the middle to late stages of Alzheimer’s disease, it may be necessary to get some home help or consider a move into a care home.