Living with dementia: next steps after a diagnosis
A diagnosis of dementia can be a big shock – for the person with the condition, and their family. It can be difficult to know what to do, what decisions need to be made, who to tell, what support is available and what happens next.
Dementia UK provides specialist dementia support for families through our Admiral Nurse service. Admiral Nurses give families the compassionate one-to-one support, expert guidance and practical solutions they need to face dementia with more confidence.
This series of leaflets has been written by Admiral Nurses, to help you to make decisions as a family about accessing the support you need, as well as anticipate and manage some common issues.
Driving and dementia
When someone who drives receives a diagnosis of dementia, one of the first concerns they and their family often have is whether they can continue to drive.
Driving is a complex task, requiring the use of various skills, including navigation, spatial awareness and speed of reaction. These skills can be affected by dementia, depending upon the type of dementia someone has and the part of the brain that is affected.
But driving is also an important tool of independence and can contribute to a person’s sense of self and self-esteem. If the person with dementia is the main or only driver in a family, this change can be challenging for everybody.
Here is some information on the legal requirements, as well as some practical suggestions to support both the person with dementia and their family.
A diagnosis of dementia does not automatically mean that the person must stop driving and many people with dementia can continue to drive following a diagnosis. However, there are some legalities that must be followed, to ensure that the person with dementia is safe when driving.
It is a legal requirement to inform both the DVLA and the person’s insurance company when they receive a diagnosis of dementia. The DVLA will then send a questionnaire and a permission request to the person’s GP and/ or consultant, to obtain medical reports. Once these have been received, the DVLA will make a decision as to whether the person can continue to drive, choosing from one of three options:
1. Renewal of the person’s licence
If the DVLA decide the person is able to continue driving, they will issue a new licence which is likely to be valid for one year. The DVLA will conduct a reassessment every year; however, it is a good idea for people close to the person with dementia to monitor their driving skills throughout the year and speak to the person’s GP if they are concerned.
2. A request for further information, either via medical details or by an on-road driving assessment
If an on-road assessment is required, then the DVLA will refer the licence holder to a centre close to them. The assessment is not a driving test, but is an overall assessment on the impact of dementia on the person’s driving. The assessment is carried out by an Occupational Therapist and an advanced driving instructor and usually lasts between one and two hours. The assessment is not there to ‘catch people out’ and is usually very supportive. These assessors will make allowances for ‘poor driving habits’ which people have developed over time, as their priority is looking at overall safety, reaction time and limb strength.
3. An immediate revoke of the person’s licence
If the DVLA decides that a person is no longer able to drive, their licence must be returned to the DVLA and the person must stop driving. It is possible to appeal against a licence being revoked. A formal petition must be lodged with the magistrate’s court within six months; however, during this time the person is still not allowed to drive.
The DVLA will always write to the licence holder with their decision.
Following a diagnosis, it is often better if the person with dementia decides to stop driving themselves, as this not only reduces any risks to them and others, but also helps them to maintain their sense of control. If at any point, the licence holder decides that they want to stop driving and give up their licence, then they need to write to the DVLA to inform them. The DVLA requires the person to fill out a ‘Declaration of Voluntary surrender’ which can be found on the DVLA website, or can be requested over the phone.
In some cases, a person with dementia will continue to drive despite encouragement not to, or will decide not to inform the DVLA of their diagnosis. This puts the person with dementia at risk of a fine and/or prosecution, of potentially invalidating their insurance, and of the risk of harm to themselves and others. In such cases, the person’s GP, if informed, may disclose relevant medical information to the DVLA. This can be done without the person’s permission, however, this is best avoided if possible.
It is not just dementia that impacts on driving; many other conditions can also have an effect on a person’s ability to drive. If you are concerned about any other conditions that a person has, it is important to visit your GP, or write to them, if you are caring for someone from a distance.
Support for the person with dementia
Giving up driving can be very difficult for a person with dementia and can often cause a lot of frustration and feelings of loss, particularly if they have driven their whole life. It is important to acknowledge this is how they may be feeling and allow them to talk about this openly, even if you are unable to provide a resolution.
Stopping driving can mean a loss of independence for a person with dementia and therefore it can help to encourage them to take more control over other aspects of their life, for example, finding other means of transport.
It may also be helpful for the person with dementia to discuss these feelings with other professionals or people who have been through the same thing. Most mobility centres provide an aftercare service for people who have stopped driving (see Sources of support). It may also be worth finding local dementia groups such as memory cafes, in which the person is able to talk about this experience with others who are in a similar position. Online groups and discussions boards may also be a useful way of sharing experiences.
Support for families
It is not only the person with dementia who can be affected by their ceasing to drive. It can also mean a lot of change for their partner, or another person who cares for them. It might mean the friend or family member being called upon to drive them around more, or accompany them on public transport. It may also be emotionally difficult, if the person with dementia blames the person who cares for them for taking away their car.
It can be very worrying for families if the person they care about continues to drive as there can be concerns about the person’s safety. If you are worried about a person with dementia driving, you may find it helpful to do the following:
Take some time together to share your concerns with the person and explain what you are worried about and why. It may also be good to hear this from other members of the family, or family friends, or the person’s GP
It may be beneficial to suggest alternatives to driving, and some of the benefits of this. For example, there is no need to find a parking space and you may save money on tax, insurance and fuel. Similarly, you could suggest walking as an alternative and as a way to get some fresh air and exercise
When having these conversations, it is important to stay calm so the person with dementia doesn’t feel they are being told to stop driving, but they are aware of your concerns for their safety. Stopping driving can be seen as a loss of independence and it is important to ensure that the person with dementia feels respected throughout
If the person with dementia has been told that they can continue driving, it may be beneficial to suggest the following to them, to help keep them confident and safe:
Try to drive in daylight and during quieter times on the roads
Try to keep driving to familiar routes with short distances
Reduce distractions such as turning off the radio and limiting conversations
Try to have a passenger in the car to help with navigation
If a person with dementia is no longer able to drive, they and their family might need some support adapting to this change. The following are some tips to help ease the practicalities of losing a licence:
Find local services such as peer support groups which are nearby, to help reduce any social isolation caused by stopping driving Invite friends and family over to your house to prevent the need to travel
Set up an account with a local taxi service and order taxis in advance
Find local voluntary agencies which may be able to assist with transport services
Order shopping online to reduce any burden of travelling
It is not just practical factors that can make losing a licence hard. Some carers feel this is an indication that the person’s dementia is progressing. Although stopping driving can be a challenging time, it does not mean that you and the person you care about cannot live a fulfilling life.
The loss of a driving licence can present other opportunities for people with dementia and their partner, for example, finding more local groups and going on walks together as opposed to driving.
With ongoing support and understanding, a person with dementia and those who care for them can successfully adjust to not driving.