Treatment and support

Unfortunately there are currently no curative treatments available for familial Alzheimer’s disease. Medications like donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl) can, however, be helpful symptomatic treatments. These medications (acetylcholinesterase inhibitors) all work by increasing the amount of a neurotransmitter called acetylcholine in the brain, which in turn helps to stabilise or improve memory, learning and overall functioning. As they all act in the same way, only one of these medications would be prescribed. However, if an individual cannot tolerate the medication they have been prescribed due to side-effects, an alternative may be tried. The medications are typically taken in tablet form but rivastigmine is also available as a patch, which can be useful if someone has difficulty swallowing tablets.

Memantine (Ebixa) is another symptomatic medication that may be used in familial Alzheimer’s disease; it modulates a different neurotransmitter in the brain called glutamate. Memantine is recommended by NICE (the National Institute for Clinical Excellence) as an option for managing moderate Alzheimer’s disease for people who cannot take acetylcholinesterase inhibitors, and as an option for managing severe Alzheimer’s disease. It may also help if someone has significant behavioural symptoms resulting from familial Alzheimer’s disease.

Other medications may be helpful for treating specific additional symptoms in familial Alzheimer’s disease if they are present, including myoclonic jerks, seizures or leg stiffness.

Symptoms of depression and anxiety are relatively common in familial Alzheimer’s disease and may be helped by medication. It is important to treat these symptoms as, if present, 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 healthy 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.

It is extremely important to ensure that support is provided for the carers and family of those with familial Alzheimer’s disease. Individuals with familial Alzheimer’s disease and their carers should be given the opportunity to discuss planning for the future at an early stage, which may involve consideration of legal and financial matters such as establishing Lasting Power of Attorney. The support of local community mental health team services can be very helpful, particularly if they have a young onset dementia team.

Families affected by familial Alzheimer’s disease may also gain support from linking up with each other, which is why we set up the familial Alzheimer’s disease support group in the UK. In 2011, the Autosomal Dominant Alzheimer’s Disease (ADAD) Forum was established to connect family members worldwide in a confidential manner and allow for open discussion. The ADAD forum website is exclusive to families with autosomal dominant Alzheimer’s disease. You can find out more information about the forum here but please only distribute this website address to individuals from families affected by familial Alzheimer’s disease.