Response to Scottish Parliament Public Petitions Committee – Consideration PE867

Alzheimer Scotland is a national charity representing the interests of Scotland’s estimated 63,000 people with dementia, and their carers. We aim to be the voice of and for people with dementia and their carers, to influence the improvement of public policies and to promote and provide high quality services for people with dementia and their carers. We welcome the opportunity to comment on the petition regarding surreptitious medication.

Introduction

There are currently around 63,000 people with dementia in Scotland. It is estimated that 18,900 (30%) have mild dementia, 26,460 (42%) have moderate dementia and 17,640 (28%) have severe dementia. People with dementia can sometimes refuse medication and as a result their caregiver may administer it surreptitiously (more commonly called covertly), for example in food or drinks.

1.Covert administration of medication

Current safeguards

There are safeguards against medication being administered covertly.

• Adults with Incapacity (Scotland) Act 2000.
• Mental Health (Care and Treatment) (Scotland) Act 2003
• Professional guidance for doctors and nurses
• Mental Welfare Commission guidance on restraint.

Extent of covert administration of medication

A recent study (Kirkevold & Engedal, 2005) in Norwegian nursing homes found that 11% of patients in a regular nursing home (59% of whom had a diagnosis of dementia) and 17% of patients in special care units for people with dementia (91% of whom had a diagnosis of dementia) received medication administered covertly at least once during seven days. Patients who received covert medication “more often received antiepiletics, antipsychotics, and anxiolytics compared with patients who were given their drugs openly”. It was found that patient characteristics such as the degree of dementia, aggression and low function in activities of daily living were the strongest explanatory factors for the covert administration of medication. In addition, people in a special care unit had a higher risk of being given drugs covertly.

Macdonald, Roberts & Carpenter (2004) found that covert medication was sometimes administered in 43% of 157 non-specialist nursing homes surveyed in the South East of England. However, only 21 (4.7%) residents were reported as having been given medicine covertly. Of these people, 14 had a severe cognitive impairment, 3 had a moderate cognitive impairment and 4 had mild or no cognitive impairment. Of the people who received covert medication, 11 were on psychotropics and 10 received covert medication for physical conditions.

Finally, a study performed in 2000 (Treloar, Beats & Philpot, 2000) found that 24 out of 34 (71%) residential, nursing, and inpatient units for people with dementia in Southeast England sometimes administered drugs covertly in food and drinks. Of 50 people caring for people with dementia in the community, 48 (96%) thought the practice of hiding medications in food was sometimes justified, although 47 (94%) people thought a doctor should ask the opinion of the caregivers before deciding on medication being hidden in food and drink. The study also found that covert treatment was not often recorded because staff were concerned about disciplinary procedures and that few of the care units had a formal policy on covert medication.

Issues

• The Kirkevold & Engedal study found that it was sedative drugs that were most frequently administered covertly.
• The Treloar study indicates that the covert administration of medication could be widespread where people with dementia live at home, as almost all carers thought that hiding medications in food is sometimes justified.
• Because of fear of reprisals, the covert administration of medication is often done without being recorded.
• Alzheimer Scotland is concerned that Part 5 of the Adults with Incapacity (Scotland) Act (2000) is still not being fully applied by some doctors; thus, its safeguards are not being fully utilised. We believe there is still work to be done by the Scottish Executive and the professional bodies to ensure universal application. There might also be issues relating to the information entered on certificates by doctors for example, how often do they specify that medication can be given in a covert manner and do they assist care home managers as much as they can by giving detailed instructions on the administration of medication?
• It should be necessary to register with the Mental Welfare Commission or the Care Commission if covert medication is being administered to a resident who lacks capacity. Care Commission officers observe the practices relating to administering medication as part of the inspection process. If they have knowledge of residents who are receiving covert medication, they would be able to examine the practice in a particular unit during their bi-annual visits.
• More use should be made of pharmacists, including community pharmacists who can advise care home managers.

2.Antipsychotic drugs

Extent of antipsychotic drug prescribing

Many recent studies have investigated the prescribing of antipsychotic drugs to people with dementia. McGrath and Jackson (1996) found that 24% of residents in nursing homes in Glasgow were treated with antipsychotics and 88% of these prescriptions were inappropriate, for example they were used to treat symptoms such as mild aggression and agitation, wandering, uncooperativeness, and insomnia. Ballard et al (2002) reported higher levels of antipsychotic prescribing in Newcastle and discussed the reduction in such prescribing though improving access to specialist liaison services.

Prentice et al (2002) found a high level of antipsychotic prescribing in nursing homes for elderly people with mental health problems in Perth and Kinross, Scotland: whilst 39% of residents in care homes met their criteria for prescribing, more than 50% of the residents were on regular medication. In addition, 25% of residents who would benefit from regular antipsychotic medication did not receive them. Thus, there was a lack of appropriate targeting of symptoms likely to respond to treatment. Of the 108 people with dementia, 46% were on regular antipsychotic medication, 14% were treated with antipsychotics when required and almost 40% were on no antipsychotic medication.

Out of 47 patients receiving regular antipsychotic medication for whom review data was available, only 10% had their medication reviewed and changed in the course of a year and 50% had not received a review of their antipsychotic medication for at least six months. Additionally, only around 7% of patients were in contact with psychiatric services. As a result of this study, protocols for prescribing were introduced in the area.

Issues

• There is not a lot of evidence for the efficacy of antipsychotic medication; for example, Hopker (2001) reported that only around 1 in 5 people who receive such drugs benefit from them.
• They can cause side effects such as increased confusion, blurred vision, depression, falls, urinary retention and parkinsonism (characterised by stiffness and shaking).

Recommendations

1. Covert administration of medication

The most obvious way to tighten things further would be to have regulations on treatments under Part 5 of the Adults with Incapacity (Scotland) Act (2000) (for example, treatments involving restraint or administration without the knowledge of the adult would require either a second opinion and/or a report to the Mental Welfare Commission). We believe that such regulations would be helpful. We do not believe that it would be necessary to have a court hearing in all such cases, though the possibility should be available in very contentious cases. Alternatively, a compulsory treatment order could be an appropriate legal mechanism to authorise the administration of medication.

The Code of Practice for Part 5 could be clearer in recommending that it is good practice for doctors who are prescribing for adults with incapacity to consider and consult on the way in which a treatment is to be administered as well as whether the treatment is necessary, and that these consultations should be carefully recorded.

We believe that the Care Commission needs in general to have a tighter focus on the particular needs of residents in care homes who have dementia. This would inevitably include attention to the way in which medication is administered.

Alzheimer Scotland is currently working on a general policy statement on medication for people with dementia who have diminished capacity to consent, and this work should be completed in Spring 2006.

2. Antipsychotic drugs

• Antipsychotic drugs should only be used when the behaviour of a person with dementia causes significant distress to themselves or danger to other people.
• Other strategies to deal with the challenging behaviour, such as psychological therapies, should be attempted first, unless they have previously been shown to be inappropriate.
• The need for the drug should be reviewed regularly.
• Staff should monitor side effects of the drugs and should share this information with the person’s GP.

References

Ballard, C., Powell, I., James, L., Reichelt, K., Myint, P., Potkins, D., Bannister, C., Lama, M., Howard, R., O’Brien, J., Swann, A., Robinson, D., Shrimanker, J. & Barber, B. (2002) Can psychiatric liaison reduce neuroleptic drug use and reduce health service utilisation for dementia patients residing in care facilities? International Journal of Geriatric Psychiatry, 17, 140-145.

Hopker, S. (2001) The use and misuse of drugs in dementia. In S. Benson (ed) Care Homes and Dementia, Hawker Publications Ltd.

Kirkevold, O. & Engedal, K. (2005) Concealment of drugs in food and beverages in nursing homes: cross sectional study. British Medical Journal, 330, p20.

Macdonald, A.J.D., Roberts, A. & Carpenter, I. (2004) De facto imprisonment and covert medication use in general nursing homes for older people in South East England. Aging Clinical and Experimental Research, 16, 326-330.

McGrath, A. & Jackson, G. (1996) Survey of neuroleptic prescribing in residents of nursing homes in Glasgow. British Medical Journal, 312, 611-612.

Prentice, N., Mowat, D., Law, E. & Connelly, P. (2002) Antipsychotic prescribing in nursing homes: an ongoing area of concern. Royal College of Psychiatrists – Old Age Section Annual Residential Meeting, Jersey, March 2002.

Treloar, A., Beats, B. & Philpot, M. (2000) A pill in the sandwich: covert medication in food and drink. Journal of the Royal Society of Medicine, 93 (8): 408-411.