Dr Donald Lyons: Prescribing the right treatment is a delicate matter

I told the committee that not all drug treatment was bad. I also told it that a lot of drug use was not appropriate. There are other ways to help people with dementia whose behaviour is said to be “challenging”. And there are ways for people with dementia and their carers to have more of a say in how they are being treated.

Various types of drugs are used to treat mood or behaviour problems in hospitals and care homes. Anti- psychotic drugs have deservedly received a bad press. They can be helpful for some people with dementia who experience paranoia or hallucinations. They carry a high risk of adverse effects, including an increased risk of stroke and death. They should only be used for short periods for people with severe problems. In England and Wales, there are specific targets to reduce the use of these drugs. The danger is that other drugs, possibly just as harmful, will take their place.

In Scotland, we have found a tendency to use antidepressant drugs, especially trazodone, purely to sedate people. In small regular doses, these drugs can reduce anxiety and lift mood, but they were being given on an irregular “as required” basis purely to sedate. Anti-anxiety drugs such as diazepam or sleeping tablets are in widespread use. They cause daytime sedation and increase the risk of falls.

So are all psychoactive drugs for people with dementia bad? No. Drugs aimed at improving memory may have a place in improving mood and behaviour, even in advance stages. Antidepressants have a place if given to reduce anxiety and lift mood, not primarily to sedate. And there are people with severely disturbed behaviour or psychotic symptoms who may have an improved quality of life on anti-psychotic drugs.

The danger is that drug treatment is often too easy an option. Well-designed care environments with well-trained staff and good leadership have lower uses of drugs. “Dementia-friendly” design includes good use of signs, good lighting, especially natural light, places of interest to walk to and good access to safe outdoors space. Many newer care homes and hospitals have good design features built in. Staff must be well-trained and supported by managers and have a good understanding of the human rights of the person with dementia. The Scottish Human Rights Commission invested heavily in training on this.

So, if you have dementia, or care for a person with dementia, should you be worried about inappropriate use of medication in care homes? Possibly, but there are things you can do. We can all grant power of attorney for welfare matters to people we trust. This can include the authority to consent to, or refuse, medical treatment. Welfare attorneys should meet with care staff and doctors to discuss ground rules about how and when they want to be consulted and about treatments that they would or would not agree to. If there is disagreement, there is the opportunity of an independent opinion.

If you are caring for a person with dementia who has not given power of attorney, you can apply to the court to be a welfare guardian with the power to consent to treatment, and other welfare powers if necessary. If you have formal powers to consent or refuse, make sure you give a copy of the document to the care home and the prescriber. You can only consent or refuse consent; you cannot use these powers to demand any particular treatment.

In Scotland, medical treatment for a person who lacks capacity to consent must be given under either incapacity or mental health law, except in emergencies. Prescribers must use statutory forms to authorise treatment and must obey the principles of the legislation when prescribing. These include benefit for the person, least restriction of freedom, taking the person’s wishes into account – including any advance statement or “living will” – and consulting others where possible. Even if the main carer does not have powers as an attorney or guardian, they still have the right to be consulted over treatment. You should ask if a certificate has been completed.

If you are not happy with drug treatment for a person with dementia, speak to the prescriber. Find out the reasons for prescribing and tell them why you disagree. You should discuss other ways to manage mood and behaviour with the prescriber and with the care home staff. You should expect care staff to know what side effects to look for. If you have formal powers, use them but remember that they can be overridden by an independent opinion. If you don’t have formal powers, you still may be able to apply to the court for an injunction. You should take advice from a solicitor experienced in this area.

The Mental Welfare Commission for Scotland has a general safeguarding role. We can give advice on best legal and ethical practice in providing care and treatment. You can contact us on 0131-313 8777 or freephone 0800-389 6809.

Care homes are regulated by the Care Inspectorate. It can investigate complaints.

Dr Donald Lyons is chief executive of the Mental Welfare Commission for Scotland