Planning for the future after a diagnosis of dementia

All of us want to be in control of our lives – to have the ability to make decisions about our future. Planning for the future after a diagnosis of dementia enables people to play a key role in making important decisions on their care needs and financial and legal affairs.

A diagnosis can raise many challenges (from working and driving to medical and care support and living arrangements). There are no easy answers, but discussing and planning for the future will help prevent difficult and often stressful situations arising later.

The benefits I’ve found from raising the Power of Attorney is that I can contact the medical staff and financial staff [about] my wife’s affairs without any problems otherwise I’d have to go through a lot of rigmarole. I also believe that by getting in early with the Power of Attorney this has helped me.

Carer speaking on the ‘Coping with dementia: money and legal matters’ video, produced by NHS Health Scotland.

A care worker should be aware of these issues and encourage a person with dementia to think about their future and plan ahead, and to seek professional guidance (or help from someone the person trusts) to ensure their personal and financial interests are protected.

For detailed information on the above, see the Dementia and decision-making section focusing on what can be done to help people make their own decisions, who should assess a person’s capacity to make decisions, making ‘best interests’ decisions and advanced care planning.

Work

Employment can be one of the most difficult issues to tackle (particularly if a person has young onset dementia and has a mortgage, young family and other financial commitments). On the key issue of how long someone can expect to keep their job following diagnosis, the Alzheimer’s Association says: ‘It depends on the degree of impairment, the demands of the job, the tolerance of an employer, and the acceptance of co-workers.’

The potential difficulties facing a person with dementia at work are explained by the Alzheimer’s Association in ‘Challenges you may face’. It says a person may have difficulties concentrating, forget meetings and appointments (or show up at the wrong times), have difficulty in retaining information or mastering new tasks, have problems in multi-tasking, and feel uncertain about making complex decisions.

The person should be encouraged to talk to their employer about the advantages and risks of continuing work, the possibility of reducing their working hours or perhaps taking on a different role for a temporary period. In time, dementia will make a job too difficult to do and the person (who would face the same difficulties if self-employed) will eventually have to give up work.

Employment advice should be sought (particularly relating to special support packages, early retirement and potential redundancy and pension schemes). Advice on what benefits may be available if someone has to stop work can be provided by Citizens Advice and by organisations including the Alzheimer’s Society and Alzheimer Scotland.

For many people, work not only provides the income to enable them to have a home and pay the bills, it also gives a structure to their lives and a sense of value and identity. The loss of a job can be devastating to them, their partner and families. A care worker can help provide emotional support and encourage a person with dementia to talk to their employer and seek expert advice.

Driving

For many people, being able to drive a car is an important part of living an independent life, particularly if they live in remote rural areas with no public transport. Having to give up driving can have a dramatic impact on how – and where – we live and our freedom to do things important to our everyday living.

A person with dementia may have to give up driving immediately (that is, because their insurance no longer covers them) or a limited time after diagnosis. This can cause great distress, particularly if the person is the only driver in the household and lives in an isolated area or miles away from bus and train stations.

A person with dementia must, by law, tell the DVLA if they want to continue to drive. The DVLA will make a decision on whether the person can continue to drive after seeking permission to obtain medical reports. It may ask the person to undergo a driving assessment and if it agrees that the person can drive, will issue a new driving licence (which is usually valid for a year).

In an NHS Health Scotland video (‘Coping with dementia – safety in the home’), a wife tells how she tried to get her husband to stop driving after he was diagnosed with dementia. ‘He wouldn’t listen. I even tried hiding the keys but he just got angry and in the end my sons took a vital piece out of the engine so it wouldn’t start’.

For related content, see the feature Dementia and decision-making.

Coping with losing a driving licence

A care worker can help by encouraging the person to talk about their concerns and discuss potential benefits (such as the savings that can be made by not having a car) and possible solutions (say friends and family being able to provide transport). A care worker can also encourage the person to see their GP, and notify the DVLA and insurance company.

Alzheimer Scotland, commenting on driving and dementia, says there is a positive side to being without a driving licence:

Owning a car is expensive when you count the cost of the car, tax, insurance, maintenance and petrol. Car owners often admit they use the car even for very short journeys, when walking would be better for their health and for the environment. And if you don’t have a car, at least you don’t have to worry about all the things that could go wrong with it.

Some people feel self-conscious about having to stop driving because of dementia. But remember, it’s a medical condition like any other. Many people have to give up driving, especially as they get older, for medical reasons. For example, some people can’t drive because of cataracts or epilepsy. So you’re not alone.

Financial decisions

Money is probably the last thing on someone’s mind when they are diagnosed with dementia. But organising financial and legal affairs at an early stage can help ensure that the person makes the right decisions about their future. Early planning enables the person to put their papers in order (for example a mortgage, insurance, banks accounts, pension and tax affairs), to put together a will and arrange a power of attorney (which allows a named person to manage their financial and legal affairs and make decisions on their behalf when they are unable to do so). It also allows them to explore the welfare benefits they or their family carer may be entitled to (such as attendance and carers’ allowances).

A care worker should not become involved in any way with a person’s financial or legal affairs. However, reassurance can be offered as well as encouragement to seek expert advice, help and support (such as from social services, the Citizens Advice or a solicitor).

For detailed information on financial and legal affairs, see the Dementia and decision-making section.

Future care

After a diagnosis, a person with dementia may need help around the home (for example with cleaning, washing and ironing clothes and with gardening), and assistance with shopping and getting to social and other events. This is usually the point at which a care worker first comes into contact with a person with dementia, family members and ‘significant others’.

For all of us, our home is a very personal place. It is where most of us feel comfortable and relaxed, it reflects our personal tastes and preferences, how we go about our everyday activities and how and when we like them done (from cooking to cleaning and changing the beds). So accepting help or support in our home from a person we don’t know can be very difficult.

Home care workers can play a significant part in helping people to accept care and support in their own home by taking time to get to know the person, their personal preferences, hobbies and interests and, most importantly, to start building a meaningful relationship based on trust and understanding. Care workers should always encourage people to maintain their independence and work within their abilities; they should listen to a person’s concerns and fears, provide reassurance and be aware of other people who can help.

A person with dementia and their family should be encouraged to talk about their present and future care needs. Depending on individual circumstances, this may well involve a range of people (with the GP and members of the community mental health team taking the health lead and social care managers covering welfare rights, income maximisation and legal issues; dementia advisers can also play a key role).

One common area of consideration is around where the person may live. This will vary according to individual needs and circumstances. However, it is important that they are given the opportunity to explore the options and implications. The more common options are remaining in their own home, living with family, in sheltered housing or extra care facilities, or in residential or nursing homes.

Consideration also needs to be given to what help is immediately available and what support can be put in place when a person is no longer able to care for themselves. When it is appropriate, consideration also needs to be given to palliative and end of life care. While this is a difficult subject to approach, it is important that personal preferences are expressed and recorded.

Under the Mental Capacity Act 2005, people (in England and Wales) have a statutory right to refuse treatment through an ‘advance decision’. This allows a person to say what kind of treatment they would or would not like in the event that they are unable to decide for themselves in the future. A care worker needs to be aware of the Act and understand individual wishes.

For detailed information on the above, see the Dementia and decision-making section.

Access and download additional resources