Abstract
Background:
In the United Kingdom, people with Parkinson disease (PD) and atypical parkinsonism will require more support with their care needs as the condition progresses. There are few data on the nature of care input required and the amount of informal and formal care needed by people with PD to enable them to remain within their own home.
Method:
All people with moderate to advanced stage (Hoehn and Yahr III-V) idiopathic PD and atypical parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service and living in their own home were invited to take part in The Northumbria Care Needs Project, a 10-year prospective longitudinal study. At baseline, data regarding formal (paid) personal and domestic care input and use of respite care, sitting services, and day centers were collected. We also collected data on patient cognitive disability, functional disability, and disease severity and informal carer tasks.
Results:
Of 162 people with PD included in the study, only 25.2% accessed formal domestic care and the same proportion formal personal care. In contrast, 80.2% identified an informal carer who helped with these tasks. Despite greater level of functional disability in those with an informal carer, levels of formal personal care input were similar to those with and without a formal carer. Levels of formal domestic carer input were higher in those without an informal carer.
Conclusions:
Use of formal care services was relatively uncommon in our cohort and much of the burden of caring appears to be being met by informal carers.
Introduction
Parkinson disease (PD) is the second most common neurodegenerative condition in the United Kingdom affecting an estimated 145 519 people. 1 It is a complex condition that results in motor impairments (eg, movement and mobility problems) and nonmotor symptoms (eg, sleep problems, cognitive impairment, depression, and behavioral changes). 2 Many people with PD (PwP) will require care from either an informal carer, usually a family member, or formal carers (paid carers) within their own home as their condition progresses. Support may include help with everyday tasks such as ensuring medication concordance, assisting with activities of daily living, and facilitating social engagement. 3 Many informal carers who look after a PwP consider it to be a family duty. 4 However, the role is associated with increased carer stress and burden and has an impact on the carer’s quality of life (QoL), including their physical and mental well-being. 5
In England, the financial cost of formal care input may be met through local government assistance with social care needs or through the National Health Service (NHS), where the need for nursing care is assessed, or a combination of the two. 6 However, care provision is based on assessment of need and is currently means tested. It is thus, rarely free where there is evidence the recipient may be able to pay for their care. As a consequence, there is evidence of significant unmet need and greater reliance on informal carers. 7
The 2016 Carers UK annual survey 8 was completed by 6149 carers for people of all ages and with a wide range of conditions. It found that a fifth of carers who were providing 50 hours or more of care each week were receiving no practical support with their caring role. Around a third (34%) of respondents also reported a recent reduction in the amount of formal care and support services received, and more than half of those reporting a reduction (59%) said that the amount of formal care received had been reduced due to the cost or availability of services. It was reported that carers were struggling to get the support from health and care services that they needed to care and were often pushed to breaking point. Many reported having to give up work, stop caring, or even go into hospital themselves, unless they received practical support with caring from health and social care services. Carers UK highlighted the contribution of carers to meeting care needs in the general elderly population and estimated the annual financial cost of this care (£132 billion) to be similar to total annual government spending on health-care services (£134 billion). 8
At some stage, it may not be possible to maintain the PwP at home, with studies by Nihtila et al 9 and Van Rensbergen and Nawrot 10 showing that PD is one of the leading causes of institutionalization, along with dementia. Institutional care is much more costly than care at home. Direct costs of PD care increase with Hoehn and Yahr (H&Y) disease stage 11 and can rise 5-fold on admission to institutional care. 12 The largest component of direct costs of managing PD are care home costs and inpatient hospital care with the total cost in the United Kingdom estimated at between £0.5 and £3.3 billion depending on the model used. 13 Consequently, financial costs to society are high and interventions to prevent or delay nursing home admissions are of considerable interest. There are scant data on the predictors of care home placement and factors that may be amenable to intervention to prevent placement in PwP. 14
The objectives of the Northumbria Care Needs Project are to understand the formal and informal care needs of people with mid- to late-stage PD and how these needs change as the condition progresses. We are also investigating prospective triggers for care home admission within this group over 10 years. In this article, we aimed to examine the baseline care needs of the cohort living at home and detail the levels of formal and informal care required to meet these needs.
Methods
Ethical approval was granted by the Newcastle and North Tyneside 1 research ethics committee (ref: 14/NE/1093). Written informed consent was obtained from all study participants with capacity to consent. A consultee process with a close family member was undertaken for those deemed unable to consent (by the nurse consultant [A.H.] working on the study) in line with the requirements of the Mental Capacity Act. 15
Design, Setting, and Participants
The Northumbria Healthcare NHS Foundation Trust PD service manages around 1400 PwP and related conditions. The service catchment covers 2 local government areas, North Tyneside, largely urban, and Northumberland, largely rural, in north-east England. The Northumbria Care Needs Project, nested within the Care Homes Project, is a prospective, longitudinal study with 10-year follow-up. Data were collected at baseline (visit 1), and as long as participants were alive and living in their own home, the same data were collected at 24 months (visit 2) follow-up. Thereafter, a reduced data set will be collected annually before the final data set (the same as at visits 1 and 2) is collected at the end of the study in year 10. If a participant enters into a care home or dies, they will exit from the study. The data presented here were all collected at baseline and are cross-sectional.
All people known to the service, with a diagnosis of idiopathic PD (IPD) or PD dementia (PDD) at H&Y stage III-V, and those with corticobasal degeneration, multiple system atrophy (MSA), or progressive supranuclear palsy (PSP) were invited to participate in the study. Informal carers, who were providing regular, ongoing assistance to a PwP, were also invited to participate. People with a diagnosis of vascular Parkinsonism and drug-induced Parkinsonism were excluded due to the differing etiology of these conditions, while people with Lewy body dementia are not under this service. Baseline data collection ran from October 1, 2014, until December 31, 2015, and January 1, 2015 was taken as the prevalence date. Anyone dying or leaving the study area before this date was excluded. All inclusions and exclusions are detailed in Figure 1.
Schematic of study recruitment.
Data Collection
During a visit to the PwP’s home, data were collected for both the PwP and their informal carer (if they had one). Demographic (age and sex) and disease characteristics (disease stage, disease duration, and age at onset) data were collected for PwP as well as weight, height, and medications.
People with PD were assessed using the Modified Unified Parkinson’s Disease Rating Scale (UPDRS), 16 the Montreal Cognitive Assessment (MoCA), 17 Hospital Anxiety and Depression Scale (HADS), 18 Scale for Outcomes in Parkinson’s Disease—Sleep (SCOPA-Seep), 19 Non-motor Symptom scale (NMS), 20 Parkinson’s Disease Questionnaire 39—quality of life (PDQ-39), 21 and the Barthel Index (BI). 22 People with PD were also assessed with the Timed Up and Go assessment (TUG). 23 The TUG is used to measure the ability of PwP to perform sequential locomotor tasks that incorporate rising from a chair, walking, and turning. Interpretation, defined by the authors, was as follows: ≤10 seconds = excellent mobility (range expected for people without any mobility problems); 10 to 19 seconds = good mobility (they can go out alone and can move without a gait aid); and 20 to 30 seconds = mobility problems (they cannot go outside alone or require a gait aid). The assessment was conducted in the “on” medication state.
People with PD were asked details about any formal (paid) carer input they received during a typical week, including personal, domestic, meal deliveries, day center, and respite placements among other types of paid support. Carers were asked how many years they had acted as a carer for the PwP, about any care tasks they undertook, the duration of these tasks, and current health problems they had which they felt negatively affected their ability to fulfill their caring role. Additional information on the profile of the carers involved in this study has been published previously. 24
Data Analysis
The data were analyzed using standard statistical software, IBM SPSS (version 21; IBM, Armonk, New York). Age data were normally distributed and summarized in terms of mean and standard deviation and parametric tests applied. All other data were skewed or collected at an ordinal level and summarized in terms of median and interquartile range (IQR) and nonparametric tests applied. Remaining data were summarized by frequency and tests for categorical data (eg, χ2 test) used to assess significance. Two-tailed tests were used throughout and the threshold for statistical significance set at 5%.
Missing data were few and appeared to be largely at random. Where data were missing this is detailed within the tables. Since inferential analysis is of an exclusively bivariate nature, no attempt was made to impute missing values and data are presented as collected. The variables under investigation were not considered to fall within the same family, and so all tests were assumed to be independent of one another.
Results
Sample Demographics, Motor, and Non-Motor Symptoms
On January 1, 2015, 286 people met the inclusion criteria, of whom 162 (56.6%) consented to participate in the study. Figure 1 summarizes the recruitment process. Those who consented to participate were significantly younger (73.9 years consented, 78.4 years did not consent), t (284) = 4.952, P < .001. Although there was a higher proportion of males in those who consented than in those who did not consent, the difference was not significant (60.0% male consented, 58.8% male did not consent), χ2 (1) = 0.922, P = .337.
Of the 162, the diagnosis was IPD in 142 (87.7%), PDD in 10 (6.2%), MSA in 5 (3.1%), and PSP in 5 (3.1%). Median disease duration was 7 years (IQR: 5-11). Disease stages (H&Y) for the 152 people with IPD or PDD were III, n = 90 (55.6%); IV, n = 55 (34.0%); and V, n = 7 (4.3%). Data for demographics, formal care input, informal care task support, and medication use by disease stage can be seen in Table 1.
Demographics, Motor Symptoms, and Non-motor Symptoms by Hoehn and Yahr Stage.
Abbreviations: ADL, Activity of daily living; CBD, corticobasal degeneration; HADS, Hospital Anxiety and Depression Scale; IQR, interquartile range; MoCA, Montreal Cognitive Assessment; MSA, multiple system atrophy; PDQ, Parkinson’s Disease Questionnaire, NMS, Non-Motor Symptom Questionnaire; PEG; Percutaneous endoscopic gastrostomy; PSP, progressive supranuclear palsy; SCOPA, Scales for Outcomes in PD—Sleep Scale; UPDRS, Unified Parkinson’s Disease Rating Scale.
Of the 162 PwP, 132 identified an informal carer. One-hundred and twenty-three carers were also recruited, although data for 8 were excluded due to substantial amounts of missing data, giving a cohort of 115 carers (see Figure 1).
Motor Symptoms
Of 151 PwP able to undertake the TUG, only 26 (17.2%) had scores of 10 seconds or under, 59 (39.1%) scored 10 to 19 seconds, while the majority, 66 (43.7%), took 20 seconds or longer to complete the test. Significant differences were identified as expected among disease stage groups for the TUG, with all PwP of stage V who had data available having mobility problems (see Table 1).
Although the overall median BI score was 17 (IQR: 13.0-19.0), indicating only mild levels of disability, there were significant differences identified between the H&Y stages, with a median score of 4 (IQR: 3-5) for those in stage V, indicating severe levels of disability. For basic care tasks, according to the BI, 85.8% needed assistance with dressing, 29.0% with toileting, and 40.1% with mealtimes.
The overall median UPDRS II (motor aspects of experiences of daily living) score was 21 (IQR: 16.0-28.5) with many PwP reporting moderate to severe difficulties for: speech 40 (25.0%, n = 160), drooling 65 (40.4%, n = 161), dressing 40 (24.8%, n = 161), hygiene 37 (23.0%, n = 161), handwriting 84 (52.2%, n = 161), doing hobbies and activities 70 (43.5%, n = 161), turning in bed 42 (26.3%, n = 160), getting out of bed/chair 56 (34.8%, n = 161), walking and balance 88 (54.7%, n = 161), and freezing 40 (24.8%, n = 161). On examination using the UPDRS III, PwP demonstrated moderate to severe levels of disability with a median score of 45 (34.0-54.0). As expected, significant differences were seen between each of the H&Y stages for both the UPDRS II and III.
Nonmotor Symptoms
From the UPDRS nonmotor aspects of experiences of daily living (UPDRS I), PwP reported moderate to severe difficulties for: sleep 46 (28.9%, n = 159), pain and other sensations 34 (21.4%, n = 159), and urinary problems 52 (32.5%, n = 160) with no statistically significant difference identified for UPDRS I total score across the H&Y stages (Table 1).
The median score for anxiety using the HADS was 6.0 (IQR: 4.0-9.0); however, 57 (39.0%) PwP scored 8 and above, of whom 22 (15.1%) scored 11 and above demonstrating abnormally high levels of anxiety. The median score for depression was 7.0 (IQR: 4.0-9.0), 49 (33.6%) PwP scored 8 and above, of whom 18 (12.3%) scored 11 and above, indicating abnormally high levels of depression. Levels of anxiety and depression increased across the disease stages, but this was not statistically significant.
People with PD also reported a variety of nonmotor symptoms (using the NMS) with a median total score of 51.0 (IQR: 28.0-67.25). Unlike motor symptoms, no significant difference was found in the NMS total score between disease stages, but in individual domains, there was a significant difference between NMS cardiovascular, symptoms related to postural hypotension, and hallucination questions.
Cognition was assessed in 161 PwP using the MoCA, of who 11 PwP were unable to complete the assessment due to very poor cognition and were scored as 0. The overall median MoCA score was 24.0 (IQR: 16.5-27.0) with 101 (62.7%) scoring <26. Significant differences were identified among the disease stage groups with the median score 14 (IQR: 0-19) for those in H&Y V.
Quality of life was also assessed using the PDQ-39, for which, the overall median single index score was 30.6 (IQR: 19.4-41.9). The single index score along with the mobility and activities of daily living domains were found to increase significantly across the disease stages.
Formal Care
Of the available data for PwP (n = 157), support from informal carers was high, with medication prompts reported by 88 (56.1%), personal care support by 82 (52.2%), domestic support by 111 (70.7%), psychological support by 84 (53.5%), and social support by 103 (65.6%).
However, only 40 (25.2%) of 159 PwP with data available were receiving formal personal care input, 40 (25.2%) formal domestic care input, and 4 (2.5%) received respite access (from 1 week per year to 2 weeks per month).
The relationship between personal and domestic care input and demographic and health factors is explored in Table 2. Having domestic care input was significantly associated with being female, greater age, higher H&Y stage, increased functional (BI) and cognitive (MoCA) disability, worse night time sleep (SCOPA), and poorer scores for the UPDRS subscales III. Personal care input was associated with greater age, higher H&Y stage, greater functional and cognitive disability, poorer UPDRS scores for all 3 subscales, higher depression scores (HADS), QoL scores (PDQ39 Single index), and NMS total and NMS domains for cognition and mood and memory, and lower scores in the NMS cardiovascular domain.
Demographic Data, Clinical Characteristics in Those With Formal Domestic and Personal Care Input.
Abbreviations: HADS, Hospital Anxiety and Depression Scale; IPD, idiopathic Parkinson Disease; MoCA, Montreal Cognitive Assessment; NMS, Non-Motor Symptom Questionnaire; PDD, PD dementia; PDQ, Parkinson’s Disease Quality of Life Scale; SCOPA, Scales for Outcomes in PD—Sleep Scale; UPDRS, Unified Parkinson’s Disease Rating Scale.
Comparing Those With an Informal Carer and Those With No Informal Carer
The interaction between having an informal carer or not and other variables was investigated, and data are presented in Table 3. People with PD with an informal carer had poorer functional ability (BI), poorer UPDRS subscale I and II scores, higher anxiety scores, and poorer NMS and QoL (PDQ39 single index) scores. Despite greater symptom burden in those with an informal carer, there was no difference between the groups with regard to formal personal care input and those with an informal carer had lower formal domestic care input.
Comparison of Those With and Without an Informal Carer.
Abbreviations: BI, Barthel Index; H&Y, Hoehn and Yahar; IQR, interquartile range; MoCA, Montreal Cognitive Assessment; MOW, Meals on Wheels; NMS, Non-Motor Symptom Questionnaire; PDQ, Parkinson’s Disease Quality of Life Scale; TUG, Timed Up and Go; UPDRS, Unified Parkinson’s Disease Rating Scale.
Discussion
There was a high burden of both motor and non-motor symptoms in those assessed. Mobility was limited in many with only 17.2% having TUG scores suggesting normal mobility. Nocera et al 25 found that after adjusting for disease severity, the TUG was highly predictive of falls risk. Not surprisingly, BI score decreased with increasing disease stage. Many people reported problems with basic practical activities such as dressing, handwriting, turning in bed, and getting in/out of a bed/chair, all of which are likely to require assistance. The high number with walking and balance problems was notable within the context of care requirement.
Nonmotor symptoms such as sleep problems may also have a major impact on carers, potentially affecting their sleep as well. The low cognitive scores are particularly concerning with two-thirds having an MoCA score of <26. This is also likely to lead to increased need for help and supervision.
Given the presence of these disabilities, formal care input was surprisingly limited for many of our cohort and was unlikely to meet more than basic care needs for those who did have it. This may be due to recent changes in how formal care is funded in the United Kingdom, with strict eligibility criteria now in place. Such care is means-tested and so frequently not provided free by the state. 6 Our data suggest that much of the care need unmet by formal care services is being met by informal carers. The observation that those with an informal carer did not have greater formal personal care input than those without an informal carer, despite the higher symptom load and disease burden is of particular note. Likewise, domestic care input was significantly lower in those with an informal carer, despite greater disease burden. Our findings support those of the 2016 Carers UK report, 8 with carers picking up much of the care burden. However, progressive, age-related, conditions such as PD and dementia offer an additional challenge with regard to informal care provision. As the disease progresses, the care burden is frequently being met by a carer of a similar age to the person they care for (eg, spouses, sibling). This, in turn, makes it highly likely that the burden of care will eventually become unsustainable, and care home admission will be inevitable. It may be that greater formal care input while people are still able to live at home may reduce care home admissions and avoid some unplanned hospital admissions. The wider financial implications of increased “at-home” care for PwP merits further investigation. 12
Limitations
This is the first published study to fully detail the formal care needs of PwP and related disorders, and we present our data within the context of informal care input and disease, health and demographic factors. Our study was conducted within a well-established PD service and led by members of the clinical care team. This helped to ensure the cohort was representative of all PwP within the catchment and helped increase recruitment rates. It was beyond the scope of our study to investigate who funded formal care costs for those who had this support, or conduct a wider economic analysis, although we feel that this is an important area. We felt that collecting such data would undermine the relationship between the PwP, their carer and the person collecting the data, who was frequently a member of the clinical care team. Furthermore, care funding arrangements can be complicated, change regularly, and vary from region to region, meaning that any data collected would have little meaning beyond the study setting. The data presented here provide a useful baseline for a dedicated study of the wider economic impact of formal and informal PD care. As with any cross-sectional study, we are unable to comment on whether the associations seen represent a cause or effect.
Conclusions
This is the most comprehensive study of formal and informal care input in PwP published to date. Our data highlight the very limited formal care provision for PwP in the United Kingdom and suggest that much of the care burden is being met by informal carers, a situation that seems likely to be unsustainable in the later stages of the condition. Long-term follow-up of our cohort will provide insight into how care needs change as the disease progresses and how these needs are met.
Footnotes
Authors’ Note
This study was conceived, organized, and managed by A.H. and R.W.W. Data collection was by A.H., L.L.O. Statistical analysis and writing of the first draft of the article was done by W.K.G. and A.H. All listed authors were involved in the preparation, review, and critique of the final manuscript. All authors have approved the final manuscript for submission.
Acknowledgments
The authors thank all PwP and their carers who participated in this study. The authors would like to thank Steve Dodds and Tina Mahan for support with data collection and Victoria Ferguson for assisting with data input.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was part funded by a grant from Parkinson’s UK (Ref: G-1310). Northumbria Healthcare NHS Foundation Trust acknowledges the support of the National Institute of Health Research Clinical Research Network (NIHR CRN).
