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Geriatr Gerontol Int 2014; 14: 947–953
ORIGINAL ARTICLE: EPIDEMIOLOGY, CLINICAL PRACTICE AND HEALTH
Experience of care home residents with Parkinson’s disease: Reason for admission and service use Richard W Walker,1,2 Jessica Palmer,3 Jonathan Stancliffe,3 Brian H Wood,1 Annette Hand1 and William K Gray1 1
Department of Medicine, Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, North Shields, 2Institute of Health and Society, and 3The Medical School, Newcastle University, Newcastle-upon-Tyne, UK
Aim: The care needs of people with Parkinson’s disease (PD) are poorly understood. We aimed to investigate the factors that precipitate entry to institutional care, and on-going care needs once in care, within a representative cohort of community-dwelling people with PD. Method: All people with idiopathic PD, Parkinson’s plus syndromes and vascular parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service who were living in care homes on 1 January 2013 were included. Disease severity (Hoehn and Yahr stage) and demographic data were collected. Admissions to hospital over the previous 2 years and in the year before institutional care admission were documented. Results: A total of 90 patients (51 females) with a mean age of 81.3 years were included. During care home stay, the median number of emergency department attendances, the median number of hospital admissions and the median length of stay for those admitted per year were significantly lower than before care home admission. Both before care home admission and during care home stay, falls were the most common diagnoses in people attending emergency departments, with 32 of 65 (49.2%) admissions before and 34 of 59 (57.6%) admissions during care home stay having falls recorded as a cause of attendance. Conclusions: Hospital attendances and admissions were relatively common, even after institutional care home placement. Events precipitating admission, such as falls, might be preventable. PD nurse specialists could be an effective way to help train staff in homes where someone is known to have PD. Geriatr Gerontol Int 2014; 14: 947–953. Keywords: care homes, nursing care, Parkinson’s disease.
Introduction Parkinson’s disease (PD) is the second most common neurodegenerative condition in the UK, affecting approximately 1:1000 of the population. The prevalence increases with age, affecting approximately 1:200 of those aged over 75 years.1 It is progressive and fluctuating, with a range of motor and non-motor symptoms. The largest components of direct costs for the care and treatment of people with PD in the UK are inpatient care and nursing home costs, with the total cost estimated to be between £449 million and £3.3 billion
Accepted for publication 30 October 2013. Correspondence: Professor Richard Walker MD, Department of Medicine, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH, UK. Email: [email protected]
© 2013 Japan Geriatrics Society
annually, depending on the cost model and prevalence rates used.2 Institutional care is much more costly than care at home, and can be five times as high on admission to residential care.3 Nevertheless, many people in late stage disease require specialist care, such as that provided by a nursing or residential care home.4,5 Unsurprisingly, those living in care homes tend to be older, and with more advanced disease, than those living at home.4,5 However, less obvious non-motor symptoms, such as cognitive impairment, depression and the presence of hallucinations, are also important drivers.4–7 People with PD make up a small, but significant, proportion of people living in care homes.4,8 It is likely to be important that care home staff are adequately trained in the management of people with PD, particularly in light of the requirement for anti-parkinsonian medication to be taken regularly, especially in later stages of the disease.9 However, there are few published data on the experience of people with PD in care. doi: 10.1111/ggi.12204
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The aim of the present retrospective study was to document the needs of care home residents with PD. We were specifically interested in comparing their needs immediately before care home admission with those during care home stay.
Methods The present study was registered with, and approved by, Northumbria Healthcare NHS Foundation Trust. The requirements of the Caldicott guardian were met. Ethical approval and informed written consent from patients were not required for this audit. Data were collated between January and March 2013.
Inclusion and exclusion criteria People were included in the study if they were under the care of the Northumbria Healthcare NHS Foundation Trust’s PD service, had a diagnosis of idiopathic PD or other forms of parkinsonism and were living in institutional care (defined as residential, nursing, elderly mentally infirm [EMI] residential, EMI nursing care or NHS continuing care). We excluded those living in sheltered accommodation or “sheltered-plus” accommodation. PD was defined according to the UK PD Society Brain Bank Criteria. Other forms of parkinsonism included were multiple system atrophy (MSA), progressive supranuclear palsy (PSP), dementia with Lewy bodies (DLB), drug-induced parkinsonism and vascular parkinsonism.
Demographics, medication use and care home admission data Medical records for those included were obtained, and data relating to age, sex, disease duration, disease stage10 and medication use on 1 January 2013 were collected. Data were also collected relating to circumstances surrounding admission to the care home (date, reason for admission etc.). Data relating to falls are presented as recorded in the medical notes. We determined the daily dosage of levodopa and of other anti-parkinsonian medication. Levodopa dose and levodopa equivalent dose (LED) were both calculated. LED was calculated using the following conversions to 100 mg of levodopa: pergolide 1 mg, cabergoline 1 mg, ropinirole 4 mg, pramipexole 1 mg, selegiline 10 mg, entacapone 120 mg, rasagiline 1 mg and rotigotine 3.3 mg.11
Use of medical services before and during care home admission Data were collected relating to medical services use in the year before care home admission and during the 2 948 |
years of care home stay immediately before the study (January 2011 to December 2012). Data collected included the use of specialist PD services, attendances at the emergency department and hospital admissions. A number of participants had been resident in the care home for less than the 2-year data collection period. In relation to use of medical services, only those participants who had been in care for at least a year were included, and data were scaled directly to give annual estimates of care service use.
Statistics Data were analyzed using standard statistical software, SPSS (version 18; SPSS, Chicago, IL, USA). With the exception of age, all data were non-normally distributed and so did not meet the criteria for parametric tests to be used. Data were collected at a nominal, ordinal, interval and ratio level. The Wilcoxon signed rank test, for paired non-parametric data, was used to compare participants before and during care home stay. The Mann– Whitney U-test (non-parametric data; emergency department attendances, hospital admissions; length of hospital stay), t-test (parametric data; age) and χ2-test (categorical data; Hoehn and Yahr stage, sex, PD subtypes) were used to compare independent variables. Two-tailed tests were used and the significance level set at 5%.
Results A total of 98 people met the inclusion criteria. A total of 10 people who died shortly before 1 January 2013 were excluded, as were four people living in sheltered accommodation. Insufficient data were available for eight people who met the inclusion criteria (6 females, 2 males, mean age 81.4 years). For five of these eight, there was no date of diagnosis; one was already in care when they entered the service; for one there was no date of entering the care home; and one person was not under the care of the PD service. Thus, a full dataset was available for 90 people. Demographic and clinical data are presented in Table 1. All of those admitted to a care home from hospital were assessed before admission by a multi-disciplinary team (MDT), compared with documentation of this in just 10 (18.5%) of the 54 people admitted directly from home or sheltered housing. A total of 43 (70.5%) of 61 people in late stage disease (Hoehn and Yahr stage IV or V) compared with 16 (55.2%) of 29 in early stage disease (Hoehn and Yahr stage I–III) were in care homes where nursing care was provided. This difference was not significant (χ2 [1] = 2.042, P = 0.153). Comparing those with idiopathic PD (n = 80) and those with “Parkinson’s plus” syndromes (n = 10), there © 2013 Japan Geriatrics Society
Care homes and PD
Table 1 Descriptive data for care home residents Sex Mean age Type of care provided
51 females (56.7%), 39 males (43.3%) 81.3 years (range 60–96, standard deviation 7.200) 31 residential (34.4%), 48 nursing (53.3%), 11 mixed nursing and residential (12.2%) Mean disease duration 8.3 years (range 0.5–31, standard deviation 5.524) Mean length of time in 2.1 years (range 0.1–11.0, standard deviation 1.853) care home Diagnosis Parkinson’s disease: 80 (88.9%) Progressive supranuclear palsy: 5 (5.6%) Dementia with Lewy bodies: 2 (2.2%) Multiple system atrophy: 1 (1.1%) Vascular parkinsonism: 1 (1.1%) Drug induced parkinsonism: 1 (1.1%) Hoehn and Yahr stage II: 1 (1.1%) III: 28 (31.1%) IV: 18 (20.0%) V: 43 (47.8%) Mobility Independent: 40 (44.4%) Mobile with assistance: 14 (15.6%) Chair bound: 31 (34.4%) Bed bound: 5 (5.6%) Admission to care Hospital: 36 (40.0%) home from Home: 52 (57.8%) Sheltered housing: 2 (2.2%) Reason for admission Patient or spouse inability to cope: 47 (52.2%) Repeated falls: 19 (21.1%) Cognitive impairment: 18 (20.0%) Decreased mobility: 18 (20.0%) Hallucinations: 10 (11.1%) Delirium/confusion: 7 (7.8%), Impaired swallow: 3 (3.3%) Stroke: 2 (2.2%)
was no significant difference in mean ages (81.7 years and 78.2 years, respectively; t = −1.459, P = 0.148) or sex distribution (46 females [57.5%] and 5 females [50%], respectively; χ2 [1] = 0.204, P = 0.652). Although those with idiopathic PD tended to have longer disease duration (8.6 years and 5.9 years respectively; t = −1.484, P = 0.141) and be of a higher Hoehn and Yahr stage (56 late stage [70.0%] and 5 late stage [50%], respectively; χ2 [1] = 1.628, P = 0.202) than those with “Parkinson’s plus” syndromes, the differences were not significant.
481.9 mg (standard deviation 250.888) and the mean LED was 526.6 mg (standard deviation 305.035). All 85 participants were taking levodopa (23 were taking dispersible Madopar), three were taking entacapone, three were taking ropinirole, three were taking pramipexole and 13 were taking rotigotine. In addition, 32 patients were taking antidepressants (12 citalopram, 11 mirtazapine, 3 sertraline, 2 amitryptyline, 2 venlafaxine, 1 paroxetine and 1 trazadone), five were taking donepezil, 14 were taking rivastigmine, 10 were taking quetiapine and eight were taking opioids.
Medication use
Use of hospital services
Five patients were not taking any form of antiparkinsonian medication because medication was either ineffective or was not tolerated due to side-effects. Two had PSP, two had idiopathic PD and one had DLB. For the remaining 85, the mean levodopa dose was
During care home stay, 54 patients (60%) had home visits from the Northumbria PD service; all other people were seen at outpatient clinics. Data for use of the PD service, attendances at the emergency department and admissions to hospital are presented in Table 2. During
© 2013 Japan Geriatrics Society
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Table 2 Use of the Northumbria Healthcare NHS Foundation Trust emergency service before and after care home admission
In the year before care home admission Median Range Interquartile range
In the 2 years before the audit (2011–12)† Median Range Interquartile range
Attendances at the emergency department per year
Hospital admissions per year
Length of inpatient stay per year for those admitted
1 1–12 0–2.3 25 people (27.8%) did not attend
1 0–5 0–1.3 32 people (35.6%) were not admitted
42 1–203 18.5–77.3 Based on 58 people admitted
1 0–4.5 0–1.9 18 people (28.6%) did not attend
0.5 0–3.5 0–0.6 30 people (47.6%) were not admitted
7.4 0.5–58.8 2.3–13.2 Based on 33 people admitted
†
For those who had been living in a care home for at least a year (n = 63).
care home stay, the median number of emergency department attendances per year (w = 479.5, z = 2.094, P = 0.036) and the median number of hospital admissions per year (w = 273.5, z = 3.538, P < 0.001) were significantly lower than before care home admission. Likewise, the length of hospital stay for those admitted was significantly shorter while living in a care home (w = 20.0, z = 3.714, P < 0.001), with the median length of inpatient stay being less than one-fifth of that in the year before care home admission. During care home stay, the median number of emergency department attendances (U = 879.0, z = −0.049, P = 0.961), the median number of hospital admissions (U = 391.0, z = −0.317, P = 0.752) and the median length of hospital stay (U = 348.0, z = −0.962, P = 0.336) were not associated with being early stage or late stage disease according to the Hoehn and Yahr scale. Both before care home admission and during care home stay, falls were the most common diagnoses in people attending emergency departments, with 32 of 65 (49.2%) admissions before and 34 of 59 (57.6%) during care home stay having a fall recorded as a cause of attendance. A further nine people (13.8%) before and eight people (13.6%) during care home stay had a musculoskeletal injury that was likely to be caused by a fall recorded as a cause of emergency department attendance. Confusion and urinary tract infection were much less commonly recorded as a cause of emergency department attendance during care home stay (6.8% [n = 4] and 8.5% [n = 5], respectively) than before care home admission (16.9% [n = 11] and 10.8% [n = 7], respectively). There was no difference in the number of people attending the emergency department for falls or frac950 |
tures between those in residential care (12/23) and those in a home providing nursing care (19/36), χ2 (1) = 0.002, P = 0.964. Figure 1a shows figures for the main reason for hospital admission within the entire cohort. Falls and fractures were the most common reason for admission to hospital accounting for 19 of 58 (32.8%) admissions before and 14 of 33 (42.4%) admissions during care home stay. Figure 1b shows figures for those with “Parkinson’s plus” syndromes. Although the number is small, swallowing and pneumonia appear to be the main reasons for hospital admission after care home placement. Figure 1c, d and e show admissions data for those in Hoehn and Yahr stages III, IV and V, respectively. A total of 20% of those in Hoehn and Yahr stage III were admitted to hospital as a result of falling during care home stay. Those in later stage disease (stage V), being less mobile, were less likely to be admitted as a result of falls during care home stay (9.5%), but tended to have a greater risk of pneumonia, confusion and fractures as reasons for hospital admission.
Discussion Inability of the patient or their spouse to cope with activities of daily living was the most common cause of care home admission. The related problems of physical and cognitive decline, and repeated falls were also commonly cited. Healthcare professionals must be mindful that carer stress is a major factor underpinning admission. Increased carer support could delay the need for institutionalization. Those admitted to institutional care directly from hospital had access to full MDT assessment. Other support options in order to allow the © 2013 Japan Geriatrics Society
Care homes and PD
(a)
(b)
(c)
(d)
(e)
Figure 1 (a) Primary cause of hospital admission for all participants (n = 90). (b) Primary cause of hospital admission for participants with Parkinson’s plus syndromes (n = 10) (c). Primary cause of hospital admission for participants in Hoehn and Yahr stage III (n = 28). (d) Primary cause of hospital admission for participants in Hoehn and Yahr stage IV (n = 18). (e) Primary cause of hospital admission for participants in Hoehn and Yahr stage V (n = 43). UTI, urinary tract infection.
person to return home will have been fully explored. The routine use of MDT assessments for those living at home when care home placement is considered could also help delay care home admission, giving patients and family more time to make informed decisions. Interestingly, two-thirds of all care home residents were in late stage disease, and a substantial number of these were living in residential rather than nursing care homes. People in late stage disease are likely to need more specialized nursing care than that commonly provided in a residential care setting. As the disease progressed, it is possible that many people will not have had their care needs reassessed. The average levodopa dose was less than 500 mg per day, which is surprisingly low considering most of the © 2013 Japan Geriatrics Society
individuals had late stage disease and therefore limited intrinsic dopamine reserve. There is limited literature available comparing dosage in age-matched populations in and out of care homes, or indicating the most beneficial dosage. However, it is well known that levodopa dosage must be tailored to the individual, balancing benefits with side-effects, such as dyskinesia. Many patients in our sample had their levodopa dose decreased as their disease progressed, rather than increased, as a result of long-term side-effects. The fact that so few of the patients in the sample were on other anti-parkinsonian medication, is most likely due to discontinuation as a result of side-effects, as the majority had received at least one additional anti-parkinsonian medication in the past. | 951
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Over one-third of patients were taking antidepressant medication. Depression is thought to be undertreated in PD.12 One reason for this undertreatment is the fact that antidepressants have been shown to increase falls in the elderly, which is already a risk in PD.13 Although the number of people attending the emergency department and being admitted to hospital fell significantly on care home placement, the proportion of these events that were due to falls and fractures was remarkably similar before and after care home placement. The number of hospital admissions as a result of swallowing problems increased after care home admissions, particularly in those in late stage disease. It is likely that many attendances and admissions could be avoided with inexpensive interventions, such as falls prevention courses for staff and patients, and speech and language therapy for those with swallowing difficulty. When PD patients are admitted to hospital, their length of stay is longer than other medical patients of a similar age.14 There have been relatively few published studies of the profile and experiences of people with PD who live in care homes, particularly from the UK. A study by the Northumbria PD team within a prevalent population of people with idiopathic PD in North Tyneside found that 14% were living in residential or nursing homes, representing 1.6% of the total nursing/ residential home population.4 Those in care were significantly older, had later stage disease, poorer cognitive function and poorer functional ability. A further study by our team in rural Northumberland reported similar findings.15 Our data in relation to rates of hospital attendance and admission support the view that people with PD in institutional care tend to have poor outcomes. The reasons for this are likely to be multifactorial, and disease progression during institutionalization is likely to be a major factor. Increased symptom load, including reduced physical function, swallowing difficulty and urinary dysfunction, will lead to an increased need for hospital services. Nevertheless, specialist services for people with PD in institutional care can be more difficult to access, particularly for those with cognitive impairment and for those without a family member able to contact services on their behalf. Staff in institutional care might be less experienced in dealing with the condition, and less familiar with the medications and their side-effects. Patients with later stage PD could be severely disabled for long periods, and require considerable help with activities of daily living. They might no longer be guaranteed a consistent response to their dopaminergic medication. Furthermore, this can result in the prescription of a large number of antiparkinsonian drugs with significant time spent balancing the effects of drugs against side-effects. PD nurse specialists (PDNS) are an invaluable source of infor952 |
mation and support in this regard. PDNS have previously provided educational support to residential and nursing homes, a role that, more recently, has been fulfilled by Education and Training Officers on behalf of Parkinson’s UK. The turnover of staff in homes can be rapid, and in some care homes there might be no patients with PD, meaning that practical hands-on experience does not go hand-in-hand with the training given. In the UK, the National Institute for Health and Clinical Excellence PD guidelines16 stress the importance of management of PD patients by specialist MDTs. There are no specific statements in relation to standards of good practice in care homes for PD. Patients should continue to be managed by the specialist MDT, including PDNS and specialist physiotherapists. Physiotherapists with PD expertise can provide specific interventions, such as cueing strategies to overcome freezing of gait. Nominating a residential home or nursing home to specialize in PD in one locality where the staff are more highly trained in dealing with PD, and where those requiring 24-h care can be directed towards, might lead to better care and potentially reduce hospital admissions. Further investigation of this type of approach is required. There are scant data with regard to the number of patients with PD living in care homes or their care needs, and there is very little evidence available to support any specific care model at present. The sample of patients used by the present study was relatively small, and so the data must be interpreted cautiously. Some data were unobtainable for some patients, as they were referred to the Northumbria team after their diagnosis. Some patients with a diagnosis of DLB were cared for mainly by Psychiatry of Old Age Service, and these patients have not been included. The retrospective nature of data collection means that we do not have detailed information relating to the nature and frequency of falls. Such data could only be obtained reliably through a prospective study.17 We chose to include those with “Parkinson’s plus” syndromes in the present study. Although this might have increased the heterogeneity of our cohort, we feel that their inclusion is justified in that the similarities in clinical presentation are likely to be reflected in a similar experience of health and care services use both before and during care home stay. Furthermore, wider discussion around optimal models of care service delivery for people with PD must consider the needs of those with “Parkinson’s plus” syndromes. The present study describes the experience of people with PD living in care homes. Hospital attendances and admissions were relatively common in this group. The effectiveness of various models of care for people with PD should be surveyed, and models assessed by appropriately powered prospective trials. © 2013 Japan Geriatrics Society
Care homes and PD
Acknowledgements We thank all members of staff at Northumbria Healthcare NHS Foundation Trust who assisted in data collection. This research received no specific grant from any funding agency in the public, commercial or notfor-profit sectors. Jonathan Stancliffe and Jessica Palmer carried out this work in part fulfilment of the requirements of their medical degree at Newcastle University.
Disclosure statement The authors declare no conflict of interest.
References 1 Porter B, Macfarlane R, Unwin N, Walker R. The prevalence of Parkinson’s disease in an area of North Tyneside in the North-East of England. Neuroepidemiology 2006; 26: 156–161. 2 Findley LJ. The economic impact of Parkinson’s disease. Parkinsonism Relat Disord 2007; 13: S8–S12. 3 Findley L, Aujla M, Bain PG et al. Direct economic impact of Parkinson’s disease: a research survey in the United Kingdom. Mov Disord 2003; 18: 1139–1145. 4 Porter B, Henry SR, Gray WK, Walker RW. Care requirements of a prevalent population of people with idiopathic Parkinson’s disease. Age Ageing 2010; 39: 57–61. 5 Aarsland D, Larsen J, Tandberg E, Laake K. Predictors of nursing home placement in Parkinson’s disease: a population-based, prospective study. J Am Geriatr Soc 2000; 48: 938–942. 6 Buchanan R, Wang S, Huang C, Simpson P, Manyam B. Analyses of nursing home residents with Parkinson’s disease using the minimum data set. Parkinsonism Relat Disord 2002; 8: 369–380.
© 2013 Japan Geriatrics Society
7 Goetz C, Stebbins G. Mortality and hallucinations in nursing home patients with advanced Parkinson’s disease. Neurology 1995; 45: 669–671. 8 Mitchell SL, Kiely DK, Kiel DP, Lipsitz LA. The epidemiology, clinical characteristics, and natural history of older nursing home residents with a diagnosis of Parkinson’s disease. J Am Geriatr Soc 1996; 44: 394–399. 9 Barnes L, Cheek J, Nation RL, Gilbert A, Paradiso L, Ballantyne A. Making sure the residents get their tablets: medication administration in care homes for older people. J Adv Nurs 2006; 56: 190–199. 10 Hoehn M, Yahr M. Parkinsonism: onset, progression and mortality. Neurology 1967; 17: 427–442. 11 Walker RW, Howells AR, Gray WK. The effect of levodopa dose and body weight on dyskinesia in a prevalent population of people with Parkinson’s disease. Parkinsonism Relat Disord 2011; 17: 27–29. 12 Cummings JL, Masterman DL. Depression in patients with Parkinson’s disease. Int J Geriatr Psychiatry 1999; 14: 711–718. 13 Masud T, Frost M, Ryg J et al. Central nervous system medications and falls risk in men aged 60-75 years: the Study on Male Osteoporosis and Aging (SOMA). Age Ageing 2013; 42: 121–124. 14 Woodford H, Walker R. Emergency hospital admissions in idiopathic Parkinson’s disease. Mov Disord 2005; 20: 1104– 1108. 15 Walker RW, Sweeney W, Gray WK. Access to care services for rural dwellers with idiopathic Parkinson’s disease. Br J Neurosci Nurs 2011; 7: 494–496. 16 National Institute for Health and Clinical Excellenece. Parkinson’s disease: diagnosis and management in primary and secondary care NICE clinial guideline 35. London, 2006 [Cited 20 Nov 2013.] Available from URL: www.nice .org.uk/CG035. 17 Wood BH, Bilclough JA, Bowron A, Walker RW. Incidence and prediction of falls in Parkinson’s disease: a prospective multidisciplinary study. J Neurol Neurosurg Psychiatry 2002; 72: 721–725.
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Geriatr Gerontol Int 2014; 14: 947–953
ORIGINAL ARTICLE: EPIDEMIOLOGY, CLINICAL PRACTICE AND HEALTH
Experience of care home residents with Parkinson’s disease: Reason for admission and service use Richard W Walker,1,2 Jessica Palmer,3 Jonathan Stancliffe,3 Brian H Wood,1 Annette Hand1 and William K Gray1 1
Department of Medicine, Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, North Shields, 2Institute of Health and Society, and 3The Medical School, Newcastle University, Newcastle-upon-Tyne, UK
Aim: The care needs of people with Parkinson’s disease (PD) are poorly understood. We aimed to investigate the factors that precipitate entry to institutional care, and on-going care needs once in care, within a representative cohort of community-dwelling people with PD. Method: All people with idiopathic PD, Parkinson’s plus syndromes and vascular parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service who were living in care homes on 1 January 2013 were included. Disease severity (Hoehn and Yahr stage) and demographic data were collected. Admissions to hospital over the previous 2 years and in the year before institutional care admission were documented. Results: A total of 90 patients (51 females) with a mean age of 81.3 years were included. During care home stay, the median number of emergency department attendances, the median number of hospital admissions and the median length of stay for those admitted per year were significantly lower than before care home admission. Both before care home admission and during care home stay, falls were the most common diagnoses in people attending emergency departments, with 32 of 65 (49.2%) admissions before and 34 of 59 (57.6%) admissions during care home stay having falls recorded as a cause of attendance. Conclusions: Hospital attendances and admissions were relatively common, even after institutional care home placement. Events precipitating admission, such as falls, might be preventable. PD nurse specialists could be an effective way to help train staff in homes where someone is known to have PD. Geriatr Gerontol Int 2014; 14: 947–953. Keywords: care homes, nursing care, Parkinson’s disease.
Introduction Parkinson’s disease (PD) is the second most common neurodegenerative condition in the UK, affecting approximately 1:1000 of the population. The prevalence increases with age, affecting approximately 1:200 of those aged over 75 years.1 It is progressive and fluctuating, with a range of motor and non-motor symptoms. The largest components of direct costs for the care and treatment of people with PD in the UK are inpatient care and nursing home costs, with the total cost estimated to be between £449 million and £3.3 billion
Accepted for publication 30 October 2013. Correspondence: Professor Richard Walker MD, Department of Medicine, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH, UK. Email: [email protected]
© 2013 Japan Geriatrics Society
annually, depending on the cost model and prevalence rates used.2 Institutional care is much more costly than care at home, and can be five times as high on admission to residential care.3 Nevertheless, many people in late stage disease require specialist care, such as that provided by a nursing or residential care home.4,5 Unsurprisingly, those living in care homes tend to be older, and with more advanced disease, than those living at home.4,5 However, less obvious non-motor symptoms, such as cognitive impairment, depression and the presence of hallucinations, are also important drivers.4–7 People with PD make up a small, but significant, proportion of people living in care homes.4,8 It is likely to be important that care home staff are adequately trained in the management of people with PD, particularly in light of the requirement for anti-parkinsonian medication to be taken regularly, especially in later stages of the disease.9 However, there are few published data on the experience of people with PD in care. doi: 10.1111/ggi.12204
| 947
RW Walker et al.
The aim of the present retrospective study was to document the needs of care home residents with PD. We were specifically interested in comparing their needs immediately before care home admission with those during care home stay.
Methods The present study was registered with, and approved by, Northumbria Healthcare NHS Foundation Trust. The requirements of the Caldicott guardian were met. Ethical approval and informed written consent from patients were not required for this audit. Data were collated between January and March 2013.
Inclusion and exclusion criteria People were included in the study if they were under the care of the Northumbria Healthcare NHS Foundation Trust’s PD service, had a diagnosis of idiopathic PD or other forms of parkinsonism and were living in institutional care (defined as residential, nursing, elderly mentally infirm [EMI] residential, EMI nursing care or NHS continuing care). We excluded those living in sheltered accommodation or “sheltered-plus” accommodation. PD was defined according to the UK PD Society Brain Bank Criteria. Other forms of parkinsonism included were multiple system atrophy (MSA), progressive supranuclear palsy (PSP), dementia with Lewy bodies (DLB), drug-induced parkinsonism and vascular parkinsonism.
Demographics, medication use and care home admission data Medical records for those included were obtained, and data relating to age, sex, disease duration, disease stage10 and medication use on 1 January 2013 were collected. Data were also collected relating to circumstances surrounding admission to the care home (date, reason for admission etc.). Data relating to falls are presented as recorded in the medical notes. We determined the daily dosage of levodopa and of other anti-parkinsonian medication. Levodopa dose and levodopa equivalent dose (LED) were both calculated. LED was calculated using the following conversions to 100 mg of levodopa: pergolide 1 mg, cabergoline 1 mg, ropinirole 4 mg, pramipexole 1 mg, selegiline 10 mg, entacapone 120 mg, rasagiline 1 mg and rotigotine 3.3 mg.11
Use of medical services before and during care home admission Data were collected relating to medical services use in the year before care home admission and during the 2 948 |
years of care home stay immediately before the study (January 2011 to December 2012). Data collected included the use of specialist PD services, attendances at the emergency department and hospital admissions. A number of participants had been resident in the care home for less than the 2-year data collection period. In relation to use of medical services, only those participants who had been in care for at least a year were included, and data were scaled directly to give annual estimates of care service use.
Statistics Data were analyzed using standard statistical software, SPSS (version 18; SPSS, Chicago, IL, USA). With the exception of age, all data were non-normally distributed and so did not meet the criteria for parametric tests to be used. Data were collected at a nominal, ordinal, interval and ratio level. The Wilcoxon signed rank test, for paired non-parametric data, was used to compare participants before and during care home stay. The Mann– Whitney U-test (non-parametric data; emergency department attendances, hospital admissions; length of hospital stay), t-test (parametric data; age) and χ2-test (categorical data; Hoehn and Yahr stage, sex, PD subtypes) were used to compare independent variables. Two-tailed tests were used and the significance level set at 5%.
Results A total of 98 people met the inclusion criteria. A total of 10 people who died shortly before 1 January 2013 were excluded, as were four people living in sheltered accommodation. Insufficient data were available for eight people who met the inclusion criteria (6 females, 2 males, mean age 81.4 years). For five of these eight, there was no date of diagnosis; one was already in care when they entered the service; for one there was no date of entering the care home; and one person was not under the care of the PD service. Thus, a full dataset was available for 90 people. Demographic and clinical data are presented in Table 1. All of those admitted to a care home from hospital were assessed before admission by a multi-disciplinary team (MDT), compared with documentation of this in just 10 (18.5%) of the 54 people admitted directly from home or sheltered housing. A total of 43 (70.5%) of 61 people in late stage disease (Hoehn and Yahr stage IV or V) compared with 16 (55.2%) of 29 in early stage disease (Hoehn and Yahr stage I–III) were in care homes where nursing care was provided. This difference was not significant (χ2 [1] = 2.042, P = 0.153). Comparing those with idiopathic PD (n = 80) and those with “Parkinson’s plus” syndromes (n = 10), there © 2013 Japan Geriatrics Society
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Table 1 Descriptive data for care home residents Sex Mean age Type of care provided
51 females (56.7%), 39 males (43.3%) 81.3 years (range 60–96, standard deviation 7.200) 31 residential (34.4%), 48 nursing (53.3%), 11 mixed nursing and residential (12.2%) Mean disease duration 8.3 years (range 0.5–31, standard deviation 5.524) Mean length of time in 2.1 years (range 0.1–11.0, standard deviation 1.853) care home Diagnosis Parkinson’s disease: 80 (88.9%) Progressive supranuclear palsy: 5 (5.6%) Dementia with Lewy bodies: 2 (2.2%) Multiple system atrophy: 1 (1.1%) Vascular parkinsonism: 1 (1.1%) Drug induced parkinsonism: 1 (1.1%) Hoehn and Yahr stage II: 1 (1.1%) III: 28 (31.1%) IV: 18 (20.0%) V: 43 (47.8%) Mobility Independent: 40 (44.4%) Mobile with assistance: 14 (15.6%) Chair bound: 31 (34.4%) Bed bound: 5 (5.6%) Admission to care Hospital: 36 (40.0%) home from Home: 52 (57.8%) Sheltered housing: 2 (2.2%) Reason for admission Patient or spouse inability to cope: 47 (52.2%) Repeated falls: 19 (21.1%) Cognitive impairment: 18 (20.0%) Decreased mobility: 18 (20.0%) Hallucinations: 10 (11.1%) Delirium/confusion: 7 (7.8%), Impaired swallow: 3 (3.3%) Stroke: 2 (2.2%)
was no significant difference in mean ages (81.7 years and 78.2 years, respectively; t = −1.459, P = 0.148) or sex distribution (46 females [57.5%] and 5 females [50%], respectively; χ2 [1] = 0.204, P = 0.652). Although those with idiopathic PD tended to have longer disease duration (8.6 years and 5.9 years respectively; t = −1.484, P = 0.141) and be of a higher Hoehn and Yahr stage (56 late stage [70.0%] and 5 late stage [50%], respectively; χ2 [1] = 1.628, P = 0.202) than those with “Parkinson’s plus” syndromes, the differences were not significant.
481.9 mg (standard deviation 250.888) and the mean LED was 526.6 mg (standard deviation 305.035). All 85 participants were taking levodopa (23 were taking dispersible Madopar), three were taking entacapone, three were taking ropinirole, three were taking pramipexole and 13 were taking rotigotine. In addition, 32 patients were taking antidepressants (12 citalopram, 11 mirtazapine, 3 sertraline, 2 amitryptyline, 2 venlafaxine, 1 paroxetine and 1 trazadone), five were taking donepezil, 14 were taking rivastigmine, 10 were taking quetiapine and eight were taking opioids.
Medication use
Use of hospital services
Five patients were not taking any form of antiparkinsonian medication because medication was either ineffective or was not tolerated due to side-effects. Two had PSP, two had idiopathic PD and one had DLB. For the remaining 85, the mean levodopa dose was
During care home stay, 54 patients (60%) had home visits from the Northumbria PD service; all other people were seen at outpatient clinics. Data for use of the PD service, attendances at the emergency department and admissions to hospital are presented in Table 2. During
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Table 2 Use of the Northumbria Healthcare NHS Foundation Trust emergency service before and after care home admission
In the year before care home admission Median Range Interquartile range
In the 2 years before the audit (2011–12)† Median Range Interquartile range
Attendances at the emergency department per year
Hospital admissions per year
Length of inpatient stay per year for those admitted
1 1–12 0–2.3 25 people (27.8%) did not attend
1 0–5 0–1.3 32 people (35.6%) were not admitted
42 1–203 18.5–77.3 Based on 58 people admitted
1 0–4.5 0–1.9 18 people (28.6%) did not attend
0.5 0–3.5 0–0.6 30 people (47.6%) were not admitted
7.4 0.5–58.8 2.3–13.2 Based on 33 people admitted
†
For those who had been living in a care home for at least a year (n = 63).
care home stay, the median number of emergency department attendances per year (w = 479.5, z = 2.094, P = 0.036) and the median number of hospital admissions per year (w = 273.5, z = 3.538, P < 0.001) were significantly lower than before care home admission. Likewise, the length of hospital stay for those admitted was significantly shorter while living in a care home (w = 20.0, z = 3.714, P < 0.001), with the median length of inpatient stay being less than one-fifth of that in the year before care home admission. During care home stay, the median number of emergency department attendances (U = 879.0, z = −0.049, P = 0.961), the median number of hospital admissions (U = 391.0, z = −0.317, P = 0.752) and the median length of hospital stay (U = 348.0, z = −0.962, P = 0.336) were not associated with being early stage or late stage disease according to the Hoehn and Yahr scale. Both before care home admission and during care home stay, falls were the most common diagnoses in people attending emergency departments, with 32 of 65 (49.2%) admissions before and 34 of 59 (57.6%) during care home stay having a fall recorded as a cause of attendance. A further nine people (13.8%) before and eight people (13.6%) during care home stay had a musculoskeletal injury that was likely to be caused by a fall recorded as a cause of emergency department attendance. Confusion and urinary tract infection were much less commonly recorded as a cause of emergency department attendance during care home stay (6.8% [n = 4] and 8.5% [n = 5], respectively) than before care home admission (16.9% [n = 11] and 10.8% [n = 7], respectively). There was no difference in the number of people attending the emergency department for falls or frac950 |
tures between those in residential care (12/23) and those in a home providing nursing care (19/36), χ2 (1) = 0.002, P = 0.964. Figure 1a shows figures for the main reason for hospital admission within the entire cohort. Falls and fractures were the most common reason for admission to hospital accounting for 19 of 58 (32.8%) admissions before and 14 of 33 (42.4%) admissions during care home stay. Figure 1b shows figures for those with “Parkinson’s plus” syndromes. Although the number is small, swallowing and pneumonia appear to be the main reasons for hospital admission after care home placement. Figure 1c, d and e show admissions data for those in Hoehn and Yahr stages III, IV and V, respectively. A total of 20% of those in Hoehn and Yahr stage III were admitted to hospital as a result of falling during care home stay. Those in later stage disease (stage V), being less mobile, were less likely to be admitted as a result of falls during care home stay (9.5%), but tended to have a greater risk of pneumonia, confusion and fractures as reasons for hospital admission.
Discussion Inability of the patient or their spouse to cope with activities of daily living was the most common cause of care home admission. The related problems of physical and cognitive decline, and repeated falls were also commonly cited. Healthcare professionals must be mindful that carer stress is a major factor underpinning admission. Increased carer support could delay the need for institutionalization. Those admitted to institutional care directly from hospital had access to full MDT assessment. Other support options in order to allow the © 2013 Japan Geriatrics Society
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(a)
(b)
(c)
(d)
(e)
Figure 1 (a) Primary cause of hospital admission for all participants (n = 90). (b) Primary cause of hospital admission for participants with Parkinson’s plus syndromes (n = 10) (c). Primary cause of hospital admission for participants in Hoehn and Yahr stage III (n = 28). (d) Primary cause of hospital admission for participants in Hoehn and Yahr stage IV (n = 18). (e) Primary cause of hospital admission for participants in Hoehn and Yahr stage V (n = 43). UTI, urinary tract infection.
person to return home will have been fully explored. The routine use of MDT assessments for those living at home when care home placement is considered could also help delay care home admission, giving patients and family more time to make informed decisions. Interestingly, two-thirds of all care home residents were in late stage disease, and a substantial number of these were living in residential rather than nursing care homes. People in late stage disease are likely to need more specialized nursing care than that commonly provided in a residential care setting. As the disease progressed, it is possible that many people will not have had their care needs reassessed. The average levodopa dose was less than 500 mg per day, which is surprisingly low considering most of the © 2013 Japan Geriatrics Society
individuals had late stage disease and therefore limited intrinsic dopamine reserve. There is limited literature available comparing dosage in age-matched populations in and out of care homes, or indicating the most beneficial dosage. However, it is well known that levodopa dosage must be tailored to the individual, balancing benefits with side-effects, such as dyskinesia. Many patients in our sample had their levodopa dose decreased as their disease progressed, rather than increased, as a result of long-term side-effects. The fact that so few of the patients in the sample were on other anti-parkinsonian medication, is most likely due to discontinuation as a result of side-effects, as the majority had received at least one additional anti-parkinsonian medication in the past. | 951
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Over one-third of patients were taking antidepressant medication. Depression is thought to be undertreated in PD.12 One reason for this undertreatment is the fact that antidepressants have been shown to increase falls in the elderly, which is already a risk in PD.13 Although the number of people attending the emergency department and being admitted to hospital fell significantly on care home placement, the proportion of these events that were due to falls and fractures was remarkably similar before and after care home placement. The number of hospital admissions as a result of swallowing problems increased after care home admissions, particularly in those in late stage disease. It is likely that many attendances and admissions could be avoided with inexpensive interventions, such as falls prevention courses for staff and patients, and speech and language therapy for those with swallowing difficulty. When PD patients are admitted to hospital, their length of stay is longer than other medical patients of a similar age.14 There have been relatively few published studies of the profile and experiences of people with PD who live in care homes, particularly from the UK. A study by the Northumbria PD team within a prevalent population of people with idiopathic PD in North Tyneside found that 14% were living in residential or nursing homes, representing 1.6% of the total nursing/ residential home population.4 Those in care were significantly older, had later stage disease, poorer cognitive function and poorer functional ability. A further study by our team in rural Northumberland reported similar findings.15 Our data in relation to rates of hospital attendance and admission support the view that people with PD in institutional care tend to have poor outcomes. The reasons for this are likely to be multifactorial, and disease progression during institutionalization is likely to be a major factor. Increased symptom load, including reduced physical function, swallowing difficulty and urinary dysfunction, will lead to an increased need for hospital services. Nevertheless, specialist services for people with PD in institutional care can be more difficult to access, particularly for those with cognitive impairment and for those without a family member able to contact services on their behalf. Staff in institutional care might be less experienced in dealing with the condition, and less familiar with the medications and their side-effects. Patients with later stage PD could be severely disabled for long periods, and require considerable help with activities of daily living. They might no longer be guaranteed a consistent response to their dopaminergic medication. Furthermore, this can result in the prescription of a large number of antiparkinsonian drugs with significant time spent balancing the effects of drugs against side-effects. PD nurse specialists (PDNS) are an invaluable source of infor952 |
mation and support in this regard. PDNS have previously provided educational support to residential and nursing homes, a role that, more recently, has been fulfilled by Education and Training Officers on behalf of Parkinson’s UK. The turnover of staff in homes can be rapid, and in some care homes there might be no patients with PD, meaning that practical hands-on experience does not go hand-in-hand with the training given. In the UK, the National Institute for Health and Clinical Excellence PD guidelines16 stress the importance of management of PD patients by specialist MDTs. There are no specific statements in relation to standards of good practice in care homes for PD. Patients should continue to be managed by the specialist MDT, including PDNS and specialist physiotherapists. Physiotherapists with PD expertise can provide specific interventions, such as cueing strategies to overcome freezing of gait. Nominating a residential home or nursing home to specialize in PD in one locality where the staff are more highly trained in dealing with PD, and where those requiring 24-h care can be directed towards, might lead to better care and potentially reduce hospital admissions. Further investigation of this type of approach is required. There are scant data with regard to the number of patients with PD living in care homes or their care needs, and there is very little evidence available to support any specific care model at present. The sample of patients used by the present study was relatively small, and so the data must be interpreted cautiously. Some data were unobtainable for some patients, as they were referred to the Northumbria team after their diagnosis. Some patients with a diagnosis of DLB were cared for mainly by Psychiatry of Old Age Service, and these patients have not been included. The retrospective nature of data collection means that we do not have detailed information relating to the nature and frequency of falls. Such data could only be obtained reliably through a prospective study.17 We chose to include those with “Parkinson’s plus” syndromes in the present study. Although this might have increased the heterogeneity of our cohort, we feel that their inclusion is justified in that the similarities in clinical presentation are likely to be reflected in a similar experience of health and care services use both before and during care home stay. Furthermore, wider discussion around optimal models of care service delivery for people with PD must consider the needs of those with “Parkinson’s plus” syndromes. The present study describes the experience of people with PD living in care homes. Hospital attendances and admissions were relatively common in this group. The effectiveness of various models of care for people with PD should be surveyed, and models assessed by appropriately powered prospective trials. © 2013 Japan Geriatrics Society
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Acknowledgements We thank all members of staff at Northumbria Healthcare NHS Foundation Trust who assisted in data collection. This research received no specific grant from any funding agency in the public, commercial or notfor-profit sectors. Jonathan Stancliffe and Jessica Palmer carried out this work in part fulfilment of the requirements of their medical degree at Newcastle University.
Disclosure statement The authors declare no conflict of interest.
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7 Goetz C, Stebbins G. Mortality and hallucinations in nursing home patients with advanced Parkinson’s disease. Neurology 1995; 45: 669–671. 8 Mitchell SL, Kiely DK, Kiel DP, Lipsitz LA. The epidemiology, clinical characteristics, and natural history of older nursing home residents with a diagnosis of Parkinson’s disease. J Am Geriatr Soc 1996; 44: 394–399. 9 Barnes L, Cheek J, Nation RL, Gilbert A, Paradiso L, Ballantyne A. Making sure the residents get their tablets: medication administration in care homes for older people. J Adv Nurs 2006; 56: 190–199. 10 Hoehn M, Yahr M. Parkinsonism: onset, progression and mortality. Neurology 1967; 17: 427–442. 11 Walker RW, Howells AR, Gray WK. The effect of levodopa dose and body weight on dyskinesia in a prevalent population of people with Parkinson’s disease. Parkinsonism Relat Disord 2011; 17: 27–29. 12 Cummings JL, Masterman DL. Depression in patients with Parkinson’s disease. Int J Geriatr Psychiatry 1999; 14: 711–718. 13 Masud T, Frost M, Ryg J et al. Central nervous system medications and falls risk in men aged 60-75 years: the Study on Male Osteoporosis and Aging (SOMA). Age Ageing 2013; 42: 121–124. 14 Woodford H, Walker R. Emergency hospital admissions in idiopathic Parkinson’s disease. Mov Disord 2005; 20: 1104– 1108. 15 Walker RW, Sweeney W, Gray WK. Access to care services for rural dwellers with idiopathic Parkinson’s disease. Br J Neurosci Nurs 2011; 7: 494–496. 16 National Institute for Health and Clinical Excellenece. Parkinson’s disease: diagnosis and management in primary and secondary care NICE clinial guideline 35. London, 2006 [Cited 20 Nov 2013.] Available from URL: www.nice .org.uk/CG035. 17 Wood BH, Bilclough JA, Bowron A, Walker RW. Incidence and prediction of falls in Parkinson’s disease: a prospective multidisciplinary study. J Neurol Neurosurg Psychiatry 2002; 72: 721–725.
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