«Ameliorating incontinence in older people with cognitive impairment: Eight case studies Report to Department of Health and Ageing on the results of a ...»
AN AUSTRALIAN GOVERNMENT INITIATIVE
Ameliorating incontinence in older people with cognitive impairment:
Eight case studies
Report to Department of Health and Ageing on the results of a study funded by
an Innovative Grant originally entitled:
Use of cues to minimise incontinence in elderly people with cognitive impairment
Michael Bird* and Gaynor McNess
February 2006 *Aged Care Evaluation Unit Greater Southern Area Mental Health Service PO Box 1845 Queanbeyan, NSW 2620 Ph (02) 6124 9875, fax (02) 6299 6363 and *Centre for Mental Health Research Australian National University Canberra Index Executive summary Page 3 Acknowledgements Page 4 Introduction Page 5 Methods Page 6 Results: Eight cases of incontinence Page 8 Discussion: Comment on cases Page 18 Table 1. Summary of cases Page 17 References Page 21 Executive summary Interventions were undertaken in a small series of cases of incontinence associated with cognitive impairment in elderly people. The project was developed for two reasons, firstly as a means of adding a dementia-specific learning technique originally derived from memory research to the current repertoire available with incontinence in dementia. Secondly, by demonstrating application of these techniques to a specific problem, it was hoped that more memory researchers might be tempted out of the laboratory to apply their findings to the real-life and often severe problems which plague people who suffer memory impairment.
Two issues changed the focus of the project. One was enormous difficulty in recruiting cases which fitted the selection criteria. This was totally unexpected. In the end eight cases were attempted and, of these, three had to be aborted: one because the participant broke her leg; one because the carer withdrew the participant from the project; and, in the remaining case, because the participant had only a slight problem and was not motivated to solve it. We consider that we had a reasonable chance of success in two of these aborted cases but will never know.
The other issue was the fact that quite basic causes of incontinence had often been ignored, even when participants had been seen by continence advisors. As a result, the interventions were extremely varied. In only one of the completed cases was the dementia-specific teaching technique around which the project was planned the primary intervention, though it played a part in at least one other. Other cases included changing the drinking habits of participants, changing their toileting habits, and/or removing a sense of helplessness and motivating them to address their incontinence.
Accordingly, the objectives of the study were changed somewhat, and the report has become a detailed case-series. In the five cases which were completed, we were successful in reducing or eliminating incontinence. In four of these cases there were substantial other benefits, including less time on laundry and use of pads, improvements in quality of life and/or depression scores, and also being able to put carers in touch with support services of which they had been unaware. In one of the cases, incontinence resumed after a few months following a long holiday by the person with dementia, and we were unable to ameliorate the problem the second time around.
Outcome of the project is therefore more disappointing than we expected, with a success rate of 62%, given that three out the eight cases had to aborted. We were successful in all the cases we were able to complete but it is more parsimonious to treat aborted cases as failures, even though we believe we had a real chance of ameliorating the situation in two of them. There are too few cases to draw definitive conclusions, apart from the difficulty of recruitment. This pilot study does, however, suggest at a minimum that incontinence can cause the same distress - including shame and depression - to people with cognitive impairment as it does to people who are unimpaired. In our sample there was evidence that many of these cases had been inadequately assessed, and that some of the advice given by continence advisors to people with significant cognitive impairment was impractical, but it is impossible to generalise from such a small sample Acknowledgements The authors gratefully acknowledge the participation of people with cognitive impairment and their carers who took part in this case-series. We also wish to thank the Ageing and Aged Care Division of the Australian Government Department of Health and Ageing, not only for funding the study, but also for showing considerable forbearance in extending its timelines when we had difficulty recruiting cases.
IntroductionIncontinence is often regarded as an inevitable and untreatable consequence of ageing.
It is worthy of attention because it is neither inevitable nor, in many cases, untreatable and also because it has a significant psychosocial impact on older people. It is intrinsically distressing and it impacts significantly on daily activities, ability to go out, and interpersonal relationships – including sexual activity (Burgio, 1994). It is likely to be equally distressing for people with dementia, though they are not often asked. It is known that home carers are also distressed by the consequences of the person with dementia being incontinent and, for this reason, incontinence is a major predictor of the decision by family members to relinquish care (Resnick, 1995). In residential aged care, incontinence in residents with dementia involves significant costs in staff time and materials (Ouslander & Schnelle, 1993).
Incontinence in older people usually has primarily physical causes but, in people with dementia, there is clearly a subset of cases where cognitive impairment plays either an additive or even directly causal role. This is manifest in the fact that the prevalence of incontinence in dementia is much higher than in the general aged population (Skelly & Flint, 1995) but that non-medical interventions such as prompted voiding have a significant impact (Colling, Ouslander, Hadley, Eisch, & Campbell, 1992). Common causes of the way cognitive impairment can affect incontinence include: inability to find or sometimes even seek the toilet; toileting in places which resemble suitable receptacles (for example the wash basin or waste-paper bins) or where earlier life patterns are triggered (for example using the garden); and/or failure to recognise or respond to the physiological signals that it is time to go.
The first author has published a number of articles on teaching techniques known as the methods of fading cues and spaced retrieval (eg. Bird, 2001). The publications show, firstly, how people with mild to moderate dementia can be taught using these techniques to associate a cue or cues with a behaviour and then act on those cues where they are encountered in the environment (eg. a sign), or when they are activated (eg. a beeper). Though cues are widely advocated in dementia care, they are useless unless the person with dementia can be induced to attend to them, learn and remember what they mean, and then act on them when required (Bird, 2001). Effective methods to teach patients to do this have been slow to penetrate clinical practice.
Secondly, these publications show adaptation of spaced retrieval and fading cues to behaviours which distress carers, including incontinence. For example, a case of chronic faecal incontinence in a woman with dementia was ameliorated by using these techniques to teach her that a customised beeper, set to sound every two hours, meant that it was time to go to the toilet (Bird, 1998). This case also involved a visual cue – a well-lit commode near the bed at night. In another published case (Bird, Alexopoulos, & Adamowicz, 1995), we taught a man with urinary incontinence and dementia to follow a chain of signs to the toilet.
The original proposal for this project therefore sought, through a series of interventions, to investigate the extent to which these learning techniques could be added to existing practical methods for management of incontinence, in those cases where cognitive impairment was a causal factor. It was also hoped that publication of results in an experimental psychology journal might help encourage more cognitive researchers to emerge from the memory laboratory and apply their skills towards alleviating the real-life problems which plague people with memory impairment, including those with dementia.
* Methods Cases were recruited initially through Community Health and Aged Care Assessment Teams. Criteria for inclusion were: (a) incontinence thought to be at least in part caused by cognitive impairment associated with ageing; and, (b) living in the community with a carer.
We had a number of referrals which did not fit the criteria and, to our considerable surprise, it eventually became clear that recruitment was going to be a major problem.
We therefore made contact with the manager of a community home-care team run by a non-government organisation which had a number of potential cases and whose staff were extremely interested in participating. We applied twice for ethical approval to the NGO to undertake these cases but, after a delay of more than 6 months, were refused. Eventually, in order to make up case numbers within the extended time-line of the project, we recruited the final two cases from an aged residential care facility.
The final total of cases actually commenced was eight. Accordingly, this report is presented as a case series, with the same objective measures applied to each case.
Measurement was undertaken at the first assessment, after consent was obtained.
Frequency and nature of incontinence incidents was assessed, together with use of incontinence pads and/or frequency and means of washing soiled clothes due to incontinence.
Participants were also given the six question Leeds Depression Scale (Snaith, Bridge, & Hamilton, 1976) which has a possible total of 18, with a clinical cut-off of 6/7.
They were given five additional questions assessing the effects on quality of life of incontinence (Fonda, Woodward, D’Astoli, & Fong Chin, 1995), scored on a fourpoint Likert Scale. There is no clinical cut-off, and one of the original questions, ‘The smell of incontinence bothers me,’ was dropped because early subjects found the question itself offensive. These measures were given via personal interview, utilising a technique developed by Bird, Caldwell, Maller, & Korten (2005) which maximises the chances that people with dementia attend to each question and retain it in memory long enough to consider it on a Likert scale. All outcome measures were given again between six weeks and twelve weeks later.
Cognitive status was assessed at baseline only by the Abbreviated Mental Test (MacKenzie, Copp, Shaw & Goodwin 1996), which has a total score of 12 with scores lower than 9 suggesting that there may be cognitive problems. We also administered the Clock Drawing Test, now widely given as part of routine cognitive assessment because it taps non-verbal functioning, is not threatening, and can be given very quickly. We used the scoring system of Sunderland et al. (1989) which gives a total of 10, with scores below 7 suggesting that there may be cognitive impairment. Level of impairment was also assessed in some cases by informant report using the Clinical Dementia Rating (Morris, 1993), which assesses 6 domains of functioning and uses algorithms to classify participants into no dementia or questionable, mild, moderate, or severe dementia.
* Results: Eight cases of incontinence Detailed descriptions of the background to each case are presented here, together with interventions employed, and outcomes. Table 1 on Page 17 summarises baseline and follow-up data for each case.
Case 1 D was an 86 year old woman with Alzheimer’s disease living with her very supportive husband in the community. She scored 7 on the Abbreviated Mental Test and 8 on the Clock Drawing Test. Assessment on the Clinical Dementia Rating placed her in the mild dementia range. She was in good physical health and had good insight into both her memory impairment and her incontinence. At baseline, she obtained a score of 7 on the Leeds Depression Scale, placing her in the clinical range.
D had been incontinent of urine for about 2 years and, at baseline measurement, was having accidents 5-6 times a day. Asked about the effect of this, she said she found it embarrassing and that it depressed her. She had been assessed by a continence advisor, and her husband reported that D had been advised to perform pelvic floor exercises several times a day. It was unclear how someone with significant cognitive impairment would be able to learn and remember how to do this, and remember actually to do it. This problem became even more salient when D’s husband reported that, when he reminded D to go to the toilet or do her exercises, it often made her irritated and she refused. D was using a mean of 24 incontinence pads a week, and her husband was sending out about 7 loads of laundry a week.
We used the method of spaced retrieval and fading cues to teach D in a single session to associate a beeper with going to the toilet. After two hours, she reliably went to the toilet every 20 minutes when the beeper sounded. Her husband observed the training, was shown how to set the beeper, given a series of cues to help D remember when the beeper went off, and instructed to slowly increase the interval between beeps. By our follow-up visit one week later, he had bought a louder beeper, and had attached it to D’s blouse. We arranged for the beeper to go off while we were there. D did not appear consciously to register the sound but, nevertheless, got up without prompting and went to the toilet. That is, the association between beeper and going to the toilet had been internalised, and she did not need her husband to prompt her.
At follow-up six weeks later, there had been no incidents of incontinence for two weeks. D’s score on the Leeds Depression Scale had dropped to 4, no longer in the clinical range. She reported no longer feeling depressed or embarrassed. Use of incontinence pads had dropped from 24 a week to 3, and her husband was only sending out about 2 loads of laundry a week.