Hypothesis / aims of study
Dementia is estimated to affect over 1 million people in the UK by 2021 and the prevalence of concomitant urinary symptoms such as incontinence is estimated to exceed 50%. The resultant psychological and socio-economic burden for patient, family and carers can be substantial .
Our aim was to develop a dedicated urology service within a cognitive impairment clinic led by neurologists in order to treat and better understand the bothersome urinary symptoms suffered by these patients, with a focus on patients with dementia and urinary incontinence (UI).
Study design, materials and methods
Patients attending this clinic were invited to be assessed and interviewed by urologist, together with their family and or/carer. As well as formal history, exam and relevant investigations, themes of importance such as impact on quality of life and select question items were drawn from validated questionnaires such as the King's Health Questionnaire (KHQ) and relevant ICIQ modules. Multi-disciplinary Team (MDT) meeting was carried on same day to discuss each case, together with neurologist, psychologist, psychiatrist and specialist nursing team. Outcomes of the first 75 patients with UI and dementia have been reported.
Average age was 70 years (range 58-98, male to female ratio 1.5:1). In regards to dementia subtype, the majority had a diagnosis of Alzheimer’s disease (n=43, 57%) or Frontotemporal dementia (n=12, 16%). Average Montreal Cognitive Assessment (MoCA) score was 17/30 (range 5-29). 34% (n=18) reported faecal incontinence (as well as UI). The average score for how much leaking of urine interferes with everyday life was 7.7/10 (range 2-10). The commonest answer for when urine leaks was, for no obvious reason (72%, n=54) and 25.3% (n=19) reported this leakage occurred all the time. 58.7% (n=44) revealed some degree of sleep disturbance and tiredness due to the leakage. 83% (n=62) stated that their daily activities were limited due to UI. Two thirds of patients (n=50) stated their bladder problem makes them feel anxious or nervous. Over 80% stated that their daily activities were limited due to UI. 88% (n=67) felt the topic was socially embarrassing for them to discuss, both among their families and with health professionals. All the carers stated that the persons’ continence care affects care they provide and agreed that that more awareness and teaching would be beneficial. Moreover, less than one third of patients or carers (30.7%, n=23) were aware of or had been in contact with any bladder and bowel community service. More than half of carers (n=46, 65%) were concerned UI may be a principle reason for future nursing home admission. While all respondents stated that continence issues affected the care they provided, this was heightened in those who could not afford additional (self-funded) assistance compared to those who could (6.9/10 versus 8.3/10).
Interpretation of results
This co-ordinated approach to the management of dementia and bothersome urinary tract symptoms has revealed how much dementia patients can struggle with UI. Our clinic observations were consistent with previous research by Engberg et al and others, in regards to the range of adopted self-care behaviours by patients such as strict fluid restriction in an attempt to remedy UI . The burden of UI appeared under-reported due to the common misconceptions that it is an inevitable part of the disease and ageing process and that no treatment strategies exist. This project, while limited by small numbers of patients, shows the potential benefits of a co-ordinated approach between specialities. In financially pressured health care systems, the next step in our hospital would be for the development of a tailored referral pathway between neurologists and urologists to identify those patients who would benefit most from urology input.