Receiving a diagnosis of Young Onset (sometimes referred to as Early Onset) Dementia is a big deal. You and your family will experience a range of emotions and the first thing you will probably want to do is to come together as a family to support each other in coming to terms with what’s happened. With time, you will feel able to turn your attention to some practical considerations for living with young onset dementia.
The clinic where you get a diagnosis should offer you a follow-up appointment within a few weeks to see how you are getting on and assess your response to any medication that’s been prescribed for your dementia. They should refer you to a local dementia adviser who will provide you and your family with information about local resources and events and guidance on planning for the future. Your GP will be important, as they will probably take over prescribing your dementia medication, and have a role in co-ordinating the various services that will be involved in helping you.
The clinician who makes the diagnosis will explain to you what treatment options are available. For Alzheimer’s disease the available drugs are Donepezil, Rivastigmine, Galantamine and Memantine. For Lewy body dementia, Rivastigmine is used. There are no drugs yet to treat the symptoms of vascular dementia or frontotemporal dementia. In addition to standard treatment, you may be eligible to take part in clinical trials for new drugs. You might like to sign up to Join Dementia Research, which means that your name appears on a national database of people willing to take part in dementia research, including drug trials. See here for details about taking part in research.
It’s normal to feel sad after receiving a life changing diagnosis. In our experience people are incredibly resilient and usually find a way of carrying on despite everything. But it’s also OK to ask for help if you, or the people who care about you, experience overwhelming feelings of sadness or anxiety following a diagnosis of dementia. The service that made the diagnosis may be in position to help with this, either by offering an appointment with a psychologist, or by prescribing antidepressant medication. If not, then you should see your GP. It is unusual for people to develop very disturbed ideas or behaviour (referred to as Behavioural and Psychological Symptoms in Dementia or BPSD) in the very early stages of dementia but if this happens then you should be referred immediately to mental health services.
Is it genetic?
This is a really important question and one that you should address to the clinician who makes the diagnosis. It’s worth bearing in mind that the vast majority of early onset dementia is not genetic; it’s usually just down to bad luck and no one else in your family is at significantly increased risk. However, if there is a history of early onset dementia (onset under the age of 65) in your family, then the chance that you might be carrying a gene that causes the condition, is higher. In addition, some types of dementia, particularly frontotemporal dementia, are more likely to be genetic than others.
If a clinician suspects that a patient might have a genetic form of dementia, then they might offer them a blood test to look for a dementia-causing gene in their DNA. If this is confirmed, then other family members can decide if they wish to know whether they’re carrying the gene. This is called predictive testing and should only be done following extensive counselling in a clinical genetics service.
Employment, benefits and help continuing with work
If you are still in employment then your employer is obliged to make reasonable adjustments to allow you to continue to do your job. See our page on working with dementia. You or someone who cares for you may be eligible for benefits if you are no longer able to work. See our page on benefits and financial support.
Its important to get support after a diagnosis of young onset dementia. Your doctor or health care professional should be able to refer you to organisations that offer advice and practical support in your area. Your local Alzheimer’s Society will be able to help you and your family and supporters to access a range of information about accessing support and services. They can put you in contact with a local dementia adviser if you have received a diagnosis, or a support worker who works with families. You can find details of your nearest Alzheimer’s Society branch here.