Early symptoms
The early symptoms of familial Alzheimer’s disease (FAD) vary from person to person but are usually similar to those of typical Alzheimer’s disease – primarily memory loss. Most people with FAD have difficulties with memory, for example with recalling events and learning new information, in the early stages of their condition.
It is important to note that these symptoms are different from everyday forgetfulness as they are ‘progressive’, meaning that they become worse over time. In the early stages of FAD, symptoms may be hard to detect.
Most people with FAD have symptoms of memory loss from an early stage. In some individuals with FAD, memory impairment remains the only problem for many years. However, more unusual symptoms and signs may also occur. This can include:
- difficulties with physical movement. An individual may experience trouble walking due to stiffness in the legs, unsteadiness and slowing of their movements
- involuntary jerking movements (called myoclonus) may develop; these may begin very subtly in the fingers and become more prominent in the limbs later in the disease course
- seizures (epilepsy) can also occur, particularly in the later stages of the disease
- changes in behaviour and personality that are uncharacteristic
- apathy – a lack of interest in initiating or doing activities. This may be mistaken for depression, which can also be an early feature
- a deterioration in speech abilities
These more unusual symptoms may develop in the later stages of FAD, but in some cases, they can happen in the early stages. In some people, they may be the very first symptoms of the disease, occurring before any problems with memory.
There are medications your doctor can prescribe that can help manage some of these symptoms. You can find more information in the Treatment section at the end of this page.
Strategies for managing FAD
The symptoms and challenges associated with FAD have some similarities with Alzheimer’s disease. Therefore, some of the same strategies for managing them can also be employed.
For more information on management strategies that people affected by FAD, you may find the Alzheimer’s Society website useful. Our FAQs section also details some of the resources and information other people have found helpful, including support for children.
Support
Living with or at risk of FAD can be isolating and can have a significant impact on families. It is important that the right support is available, not only for the person with FAD, but also for their loved ones. Our FAD Support Group meetings can be a good place to start.
Support groups are a great way of accessing help, information, advice and support in a space of mutual respect and understanding. They provide opportunities to speak to professionals and ask questions, as well as for connecting with others in similar situations.
Rare Dementia Support runs a FAD Support Group for families affected by inherited Alzheimer’s disease. They run one live annual seminar which takes place in London, and quarterly online support group meetings. People affected by FAD are welcome to join our other support group meetings. Please visit our Meetings page for more details.
Another useful organisation and source of information is the Genetic Alliance UK.
It is important to note that, as FAD is so rare, many healthcare services do not have much experience supporting people with FAD. However, you may still find it helpful to seek support from a variety of health and social care professionals such as GPs and nurses, community mental health teams and social workers. Some people with FAD may experience problems with movement or coordination. In these cases, support from a neurologist, physiotherapist or occupational therapist should be accessed.
For more information on support available for all those affected by FAD, including carers, children and those at risk, please visit our FAQs section.
Treatment
Unfortunately, at the moment there are no medications that can prevent familial Alzheimer’s disease (FAD). There is a great deal of ongoing research in an effort to find treatments that alter or slow the course of FAD, or to prevent it starting in the first place. If you would like to know more about how you can get involved in clinical trials for FAD, please visit the Dementia Research Centre website.
Medications like cholinesterase inhibitors or memantine that are used to stabilise or improve memory-related symptoms in typical Alzheimer’s disease, are also used for FAD. However, they do not slow down the underlying progression of the disease in the brain. This means that over time symptoms will worsen.
Medication for behavioural symptoms and mood changes may become useful as FAD progresses. There is some evidence that selective serotonin reuptake inhibitors (SSRIs) may help improve behavioural symptoms. For example drugs such as sertraline or citalopram.
Other medications may also be helpful for treating specific symptoms in FAD if they are present, including those available for physical difficulties such as involuntary jerking movements, seizures or leg stiffness.
Symptoms of depression and anxiety are relatively common in FAD and may be helped by medication. It is important to treat these symptoms if they are present, as they may exacerbate an individual’s memory impairment. Psychological therapy may also be helpful if an individual is in the mild stage of the disease.
It is not uncommon for the relatives of people with familial Alzheimer’s disease to experience anxiety about their risk of developing the disease. Everybody has small memory lapses from time to time, but these may cause heightened anxiety in someone from a family affected by familial Alzheimer’s disease. Unfortunately, feeling anxious and low in mood can itself have an adverse effect on memory. It is therefore important that people at risk of familial Alzheimer’s disease seek help if they experience significant anxiety or depression; counselling, psychological therapy or medication may all have a role to play in improving things for them.
Please note that you should always speak to your clinician or healthcare professional before taking any medical treatment.
