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The Journal of Quality Research in Dementia, Issue 2

Survey on challenging behaviour in care homes

Richard Berry

Contact Louise Lakey, Policy officer, Alzheimer's Society, Devon House, 58 St Katharine's Way, London E1W 1JX; Telephone 0207 423 3581

Introduction

A survey of 197 care homes carried out by the Alzheimer's Society has highlighted the high frequency of aggression by people with dementia in care homes, and the high level of distress this causes to staff.

Behavioural symptoms of dementia

More than half of all people with dementia experience behavioural symptoms as part of their condition, including becoming more prone to aggression. Other behavioural symptoms may include restlessness, depression, psychosis, or loss of inhibitions. Aggressive behaviour in particular is a major source of distress for both people with dementia1 and their carers,2 as it can isolate people with dementia from those around them, interfering with their abilities to maintain relationships and interact socially.

A number of causes for these symptoms have been identified. Physical causes including colds or urinary infections may affect mood and behaviour. The damage in the brain that causes dementia may also cause behavioural changes, by damaging the part of the brain that regulates behaviour. Aggression may also be a reaction to a person with dementia being unable to understand the world around them or misinterpreting the actions of others. Aggressive behaviour often occurs in situations where care staff must assist with very intimate needs like feeding, bathing or toileting, as a person with dementia may be fearful or view this as an invasion of their privacy.

Data from field tests of the DEMQOL system (a measure of quality of life for people with dementia) confirmed that behavioural symptoms are more strongly associated with quality of life than cognition.3 The way we deal with the behavioural symptoms, therefore, is especially important.

Dementia in care homes

Although people with dementia make up 75 per cent of the care home population,4 the Alzheimer's Society estimate that only a minority of care home staff have the appropriate training to enable them to care effectively for the complex needs of people with dementia. Care home residents with dementia are more likely to experience behavioural symptoms than people with dementia generally, so it is important both to train staff to meet the needs of residents with dementia and to ensure access to drugs that relieve these symptoms.

Drugs to relieve behavioural symptoms

A number of drugs are prescribed to treat behavioural symptoms, with around 40 per cent of care home residents with dementia prescribed neuroleptic drugs.4 These drugs were developed to treat people with schizophrenia, and are not licensed to treat dementia. They are prescribed to combat symptoms such as agitation, psychosis, sleep disturbance and aggression. Evidence suggests that these drugs provide modest benefits in the short-term treatment of aggression, but the side-effects of neuroleptics can be very harmful to people with dementia.5

Effects include excessive sedation, dizziness and unsteadiness, which can lead to increased falls and injuries, as well as parkinsonism,6 akathisia, tardive dyskinesia, reduced well-being,7 social withdrawal, accelerated cognitive decline,8 QT prolongation9 and severe sensitivity reactions.10 Certain types of neuroleptic have also been found to increase the risk of mortality by 60-70%11 or treble the risk of stroke12 for people with dementia.

Drugs licensed for the treatment of dementia are anticholinesterase drugs (Aricept, Exelon and Reminyl) and, more recently, Ebixa (memantine). Emerging evidence is beginning to suggest that these drugs are effective for treating and preventing the behavioural symptoms of dementia, in addition to other benefits, without the harmful side-effects associated with neuroleptics.13 Importantly, a meta-analysis of US and European data from clinical trials with cholinesterase inhibitors reported a significant decrease in neuroleptic use, from 25 per cent to nine per cent.14

The evidence is particularly strong for the only drug licensed for moderatesevere Alzheimer's, memantine. Cummings et al assessed the effect of memantine on behavioural outcomes in moderate to severe Alzheimer's and found a mean change of NPI score of -0.1 for those treated with memantine and an anticholinesterase drug compared to 3.7 for those treated with placebo and an anticholinesterase drug.15 Of the 12 single item domains measured by the NPI, treatment with memantine led to improvements in the agitation/agression, irritability/lability and appetite/eating compared to placebo.

Recently published research found that 93 per cent of patients with Alzheimer's disease prescribed memantine experienced psychosocial benefits of the treatment after six months.16 Researchers reported:

'...improvement in psychiatric behavioural difficulties and a significant effect on activities of daily living and carer strain.'

In addition, an Alzheimer's Society survey of 2,000 people with dementia and their carers found that alongside illness stabilisation, and improving memory, awareness and activity, reducing aggression was one of the most widely reported effects of treatment with anti-dementia drugs.17

Method

The survey was intended to identify the extent and nature of aggression from residents with dementia. It also aimed to measure the effect on staff. Questionnaires were posted to 1,000 care homes, with questions covering:

  • The number of residents with dementia and with memory problems.
  • The number of incidents of 'verbal and physical aggression' recorded.
  • The situations in which incidents of aggression occur.
  • The most frequent type of aggression - verbal or physical.
  • How often staff were distressed by incidents of aggression.
  • The number of recorded incidents where staff have been injured as a result of aggression.

Results

The number of care homes responding was 197, a response rate of almost 20 per cent. This included 122 specialist dementia care homes/units, 19 care homes with nursing, and 56 care homes. The survey covered 4,142 care home residents with dementia.

Incidents

One hundred and thirty seven care homes (72.9 per cent) reported that they had recorded incidents of verbal or physical aggression from a person with dementia in the past three months. Specialist dementia homes/units were most likely to experience incidents (83.6 per cent), followed by care homes with nursing (68.7 per cent) and then care homes only (51.8 per cent).

Furthermore, we found many homes had experienced a high number of incidents. Forty three homes reported over 10 incidents, representing 22.9 per cent of homes. Specialist homes/units reported the highest amount: around a third (30.2 per cent) experienced over ten incidents. The corresponding figure for care homes with nursing was 12.5 per cent, and for care homes only it was 10.8 per cent.

There was also a significant number of homes reporting a very high number of incidents. Nine homes had experienced over 30. All but one of these was a specialist dementia home/unit, 6.9 per cent of which reported over 30 incidents (4.8 per cent of all homes).

To eliminate the possible distorting effect of the larger care homes on these results, we adjusted the figures for the 'number of residents with dementia'. Having done so, we found the results to be very similar, as this table shows1:

 Number of incidents All homes  All homes (adjusted for size)  Specialist homes  Specialist homes (adjusted for size) 
10+ Incidents 22.9%  19%  30.9%  30.2% 
30+ Incidents  4.8%  4.9%  6.9%  6.2% 

Injuries

The survey also found 35.4 per cent (n=71) care homes had recorded an injury to a member of staff as a result of physical or verbal aggression from a person with dementia in the past three months. Specialist homes/units were the most likely to have experienced staff injuries, with 45.8 per cent of homes responding positively to this question. The corresponding figure for care homes with nursing was 36.8 per cent, and for care homes only it was 12.5 per cent.

A significant number of homes reported a high number of staff injuries. We found that 11.7 per cent of specialist dementia care homes/units experienced over four staff injuries in the past three months (8.1 per cent of all homes), with 4.2 per cent of specialist homes experiencing over 10 injuries (2.5 per cent of all homes).

Unrecorded information

The above figures do not capture the full extent of aggression from residents with dementia in care homes. Several homes told us that incidents of aggression were considered 'routine' in their care home, and were rarely recorded.

Some homes were unable to give a precise figure, but estimated the actual number of incidents that occurred: these estimates ranged from approximately 100 to 300 incidents over the past three months.2

Because of this evidence of under-recording, we can also assume that the figures given for the number of recorded incidents in other homes represented only a small proportion of the true number of incidents of aggression.

This also applies to the recording of staff injuries. A number of care homes reported staff being hospitalised as a result of an injury inflicted by a person with dementia, and also about lengthy absences of work. One manager told us:

'In the past three months we have had one member of staff with epistaxis as a result of an attack and one dislocated shoulder. Staff regularly go home with bruising acquired at work... we have several incidents a week where staff are scratched or bruised. These incidents are rarely recorded, as staff see them as 'part of the job'.'

Another significant piece of information our survey failed to capture regarded which stage of their illness residents were at. This is important in terms of which residents are more prone to aggression than others. Indeed, some care homes informed us that there were particular residents that displayed aggression very frequently.

Types of aggression

The survey found that verbal aggression was the most frequent type of aggression experienced in care homes, but almost a third of all homes (30.4 per cent) reported that physical aggression or 'both physical and verbal' was the most frequent type of aggression they experienced. Specialist dementia homes/units (37.3 per cent) and care homes only (33.9 per cent) both experienced even higher levels of physical aggression.

Staff distress

There was a high level of staff distress reported (89 per cent of homes, n=169). This included 93.4 per cent of specialist homes and 100 per cent of care homes with nursing.

Twenty three (12.2 per cent) of homes reported that staff were 'frequently' distressed by challenging behaviour. This varied between home type: 12.6 per cent of specialist homes reported this, 21.1 per cent of care homes with nursing and 7.4 per cent of care homes only.

Discussion

The survey results highlight the frequency of aggression in care homes from people with dementia. Care staff are regularly faced with challenging behaviour from residents, with many of them experiencing distress or even physical injury as a result of this. Dealing with this issue adequately is necessary to improve conditions not only for care staff, but also for people with dementia.

As noted earlier, neuroleptics are frequently prescribed to relieve the behavioural symptoms of dementia, including aggression. Despite dangerous side-effects, 40 per cent of care home residents with dementia are given these drugs.

The frequency and impact of aggression clearly emphasises the need for safe treatments. Evidence from clinical trials and patient surveys has shown that the licensed anti-dementia drugs have a positive effect in relieving the behavioural symptoms of dementia, as well as gains in cognition and functional skills. The newest drug, Ebixa, has been shown to be effective for people in the mid-late stages of dementia, who are more likely to experience behavioural symptoms. Indeed, before the National Institute for Health and Clinical Excellence (Nice) published its draft guidance on the provision of anti-dementia drugs, it requested data on this sub-group of people with behavioural symptoms from the drug manufacturer. However, Nice ignored this data when recommending that Ebixa should not be prescribed in the NHS.

These results, showing the extent of aggression, highlight the need for antidementia drugs to be made available for people with dementia. This will increase their quality of life and improve conditions for carers.

The results also highlight the skilled nature of dementia care and the importance of good training. Further new research on the behaviour symptoms of dementia in the British Medical Journal last month confirms this.18 Researchers carried out a series of training and support interventions in six care homes, aimed at reducing the proportion of residents who are prescribed neuroleptics without increasing challenging behaviour. The success of these interventions was such that prescription of neuroleptics was halved without any increase in aggression.

Survey responses also supported the benefits of training. Another manager told us:

'We have a resident who can be verbally and physically aggressive only if staff do not explain to her clearly what help they will provide, and give her time to make a decision even if it is a very mundane task. Staff are trained to work at her pace and she can be managed very easily.'

Conclusion

Working in the care of people with dementia is immensely challenging work. This survey, which found high levels of aggression and staff distress, confirms this. The appropriate approach to take on this matter is both to ensure access to drugs that can help relieve the behavioural symptoms of dementia and to train carers adequately to meet residents' complex requirements.

Footnotes

1 This was done by calculating the rate of 'incidents per resident with dementia' in each home, multiplied by the mean number of residents with dementia across all homes answering the question.

2 The homes making estimates in this range were all of average or below-average size.

References

1 Gilley, DW, Whalen, ME, Wilson RS, et al (1991) Hallucinations and associated factors in Alzheimer's disease. Journal of Neuropsychiatry 3: 371-376

2 Rabins, PV, Mace, NL & Lucas MJ (1982) The impact of dementia on the family. Journal of the American Medical Society 248: 333-5

3 Banerjee, S et al (2005) Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia. Journal of Neurology, Neurosurgery, and Psychiatry 77: 146-148

4 Margallo-Lana, M et al (2001) Management of behavioural and psychiatric symptoms amongst dementia sufferers living in care environment. International Journal of Geriatric Psychiatry 16: 39-44

5 Ballard, C & Waite J (2006) The effectiveness of atypical antipsychotics for the treatment of aggression and psychosis in Alzheimer's disease. The Cochrane Database of Systematic Reviews 1

6 Tune, LE, Steele, C & Cooper, T (1991) Neuroleptic drugs in the management of behavioural symptoms of Alzheimer's disease. Psychiatric Clinics North America 14: 353-73

7 Ballard, CG, Ayre, G & Gray A (1999) Psychotic symptoms and behavioural disturbances in dementia: a review. Revue Neurologique 155 (suppl. 4): s44

8 McShane, R, Keene, J, Gedling, K, et al (1997). Do neuroleptic drugs hasten cognitive decline in dementia? Prospective study with necropsy follow-up. BMJ 314: 211-2

9 Reilly, JG, Ayis, SA, Ferrier, IN, Jones, SJ & Thomas, SH (2000) QTc-interval abnormalities and psychotropic drug therapy in psychiatric patients. Lancet 355: 1048-52

10 McKeith, IG, Fairbairn, A, Perry, R, et al (1992) Neuroleptic sensitivity in patients with senile dementia of Lewy body type. BMJ 305: 673-8

11 Food and Drug Administration (United States) (2005) Deaths with Antipsychotics in Elderly Patients with Behavioral Disturbances. 

12 Committee on Standards of Medicine (2004) Atypical antipsychotic drugs and stroke.

13 Holmes, C et al (2004) The efficacy of donezepil in the treatment of neuropsychiatric symptoms in Alzheimer disease. Neurology 63 (2): 214-9.

14 Passmore P (2005) Pharmacological Treatment of Alzheimer's Disease. Presented at Managing Dementia, March 2005, Glasgow

15 Cummings, JL et al (2004) Effect of memantine on behavioural outcomes in moderate to severe Alzheimer's disease. Presented at the 8th International Springfield Symposium on Advances in Alzheimer Therapy, April 14-17 2004, Montreal, Canada

16 Simpson, S et al (2006) Memantine for severe Alzheimer's: social benefits. Progress in Neurology and Psychiatry 10 (2): 9-13

17 Alzheimer's Society (2004) Appraisal of the drugs for Alzheimer's disease: submission to Nice. London.

18 Fossey, J et al (2006) Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: cluster randomised trial. British Medical Journal 332 (7544): 756-761