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Abstract
Objectives We established an integrated palliative homecare programme for advanced dementia. This study explores patients’ symptoms and quality-of-life and their association with enteral feeding, evaluates the impact of the programme on these parameters and examines familial caregiver burden.
Methods This is a prospective cohort study. Patients at Functional Assessment Stage 7, with an albumin level <35 g/L, pneumonia or enteral feeding were recruited. At baseline and regular intervals, the multidisciplinary homecare team used the Pain Assessment in Advanced Dementia, Mini Nutritional Assessment and Neuropsychiatric Inventory Questionnaire (NPI-Q) to identify patients’ symptoms, and the Quality of Life in Late-Stage Dementia (QUALID) tool to assess quality-of-life as primary outcomes, stratified by feeding status. The Zarit Burden Interview (ZBI) investigated caregiver burden, stratified by living arrangement and availability of stay-in help. Mann-Whitney U and χ2 tests compared continuous and categorical variables respectively between groups while Wilcoxon signed-rank test compared assessment scores at baseline and on review.
Results At baseline, 49.2% of the 254 patients had pain, 92.5% were malnourished and 85.0% experienced neuropsychiatric challenges. Patients on enteral feeding had lower NPI-Q score (median=3; IQR 1–6) than orally fed patients ((median=4; IQR 2–7), p=0.004) and higher QUALID score (median=25; IQR 21–30 vs median=21; IQR 17–25 for orally fed patients), p<0.0001, indicating a better quality-of-life for orally fed patients. Both symptoms and quality-of-life improved significantly for the 53 patients reviewed at the fifth month. Median ZBI score for caregivers was 26 (IQR 15–36). Having stay-in help reduced it from 39.5 (IQR 25–49) to 25 (IQR 15–35), p=0.001.
Conclusion An integrated multidisciplinary palliative homecare team with geriatric training that is accessible all-hours addressed the needs of home-dwelling patients with advanced dementia, improved their quality-of-life and supported families to care for them at home.
- advanced dementia
- palliative homecare
- quality-of-life
- symptoms
- caregiver burden
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INTRODUCTION
Symptoms such as pain and dyspnoea are prevalent in patients with advanced dementia, particularly at the end-of-life.1 With high symptom burden and increased physical dependency as the disease progresses, patients with advanced dementia require a substantial level of care, often exceeding caregiver capacity to provide it.2–4 This results in institutionalisation, most oftentimes in the nursing homes. However, it is the preference of many individuals to die in their own homes5 6 as the home conveys a feeling of familiarity, comfort and security.7 8 A review of the place of death for individuals with dementia found that a preference for care at home emerged consistently.9 Moving patients with advanced dementia away from the environment they are used to distresses them and heightens their confusion.10 Experts advocate for individuals with dementia to remain in environments familiar to them, cared for by people known to them.11 In spite of this, individuals with dementia rarely die at home.12 They are more likely to die in hospitals or long-term care facilities.13
A qualitative study revealed that the incorporation of palliative care principles into dementia services, and the integration across care settings are important elements facilitating quality end-of-life care for individuals with dementia.14 To honour patients’ wishes to be cared for and spend their last days at home, there needs to be a dedicated homecare service for advanced dementia so that their complex care needs can be addressed and familial caregivers can receive the support required to continue care at home. Hence, we established an all-hours homecare service encompassing these core elements. It consists of a multidisciplinary team of doctors, nurses and medical social workers trained in geriatric and palliative medicine. The team collaborates closely with the patients’ primary physicians from the referring hospital and inpatient hospice so that patients can transit seamlessly among the three settings when appropriate to ensure continuity of care.15
There has been a dearth of research regarding end-of-life care for people with dementia who continue to reside in their own homes.16 As a result, their needs, as well as their familial caregivers, are not as adequately explored. The primary objective of this study is to address this gap by identifying the needs and quality-of-life of home-dwelling persons with advanced dementia, specifically their association with enteral feeding as its association with symptoms requires more examination. With an understanding of patients’ needs and quality-of-life, we aim to evaluate the impact our palliative homecare service has on these parameters. Lastly, care at home will not be possible nor sustainable without the availability and involvement of familial caregivers.17 Hence, another objective of our study is to identify the burden of familial caregivers caring for their loved ones with advanced dementia at home.
Methods
This is a prospective cohort study. The study was conducted in Singapore, from October 2014 to November 2018.
Subject recruitment
Patients with advanced dementia were referred from the geriatric and palliative inpatient wards and outpatient clinics of a tertiary hospital in Singapore. To be eligible for the homecare programme, patients have to be at Stage 7 on the Functional Assessment Staging18 scale, with at least one of the following: an albumin level less than 35 g/L, an episode of pneumonia in the past 1 year or be on enteral feeding. These criteria were shown to be prognostic of mortality in a cohort of community-based advanced dementia patients.19 Patients who were not home-dwelling or whose families did not want a palliative care approach were not eligible for the homecare service.
Delivery of the homecare service intervention
The homecare service consists of a multidisciplinary team of doctors, nurses and medical social workers who make regular home visits and phone calls during office hours. Home visits may also be arranged on an as needed basis when families and caregivers encounter issues that cannot be resolved over a phone consult. During the home visit, the homecare team assesses patients’ needs and tailor pharmacological interventions to manage their pain and behaviour such as agitation and restlessness. Caregivers are also educated on non-pharmacological measures such as repositioning techniques, environmental modification and music therapy to relieve discomfort. Additionally, safe feeding techniques are taught and dietary advice such as small, frequent, calorie-dense meals are given to increase patients’ nutritional intake. Medical social workers provide families and caregivers with psychosocial and emotional support through counselling and referrals to other community services. A doctor is on standby to attend to emergency calls and make home visits if required after office hours, including on weekends and public holidays. Additionally, the team works closely with patients’ primary physicians from the referring tertiary hospital so that they can be directly admitted to the ward, bypassing the emergency department if appropriate. Additionally, they may also be admitted into the inpatient hospice directly if care needs increase.
Outcome measurements
Patients’ symptoms and quality-of-life
At the initial home visit, doctors and nurses used dementia-specific tools to assess patients’ symptoms and quality-of-life at baseline. For clinically stable patients with a clinician predicted survival of more than a month, pain was assessed using the Pain Assessment in Advanced Dementia (PAINAD)20 scale. It is a validated 5-item, 3-point Likert scale which assesses observed pain at rest and during movement. Each item is rated from 0 to 2 with total scores ranging from 0 to 10. A higher score indicates greater pain intensity (0= ‘no pain’ to 10= ‘severe pain’). Nutritional status was evaluated using the Mini Nutritional Assessment (MNA),21 a 6-item nutritional screening tool (0–7 points=malnutrition; 8–11 points=at risk of malnutrition and 12–14 points=normal nutritional status). Behavioural issues were assessed using the Neuropsychiatric Inventory Questionnaire (NPI-Q),22 a validated questionnaire that assesses patients’ neuropsychiatric symptoms over the past month. It consists of 12 items scored separately in two domains; symptom severity on a 3-point scale, and their impact on the caregiver (ie, caregiver distress) on a 5-point scale. Higher scores indicate more severe neuropsychiatric problems.
The patient’s quality-of-life was rated using the Quality of Life in Late-Stage Dementia (QUALID)23 tool. It is an 11-item questionnaire, rated on a 5-point Likert scale based on the observation of patients’ moods and behaviours over the past 7 days. Total scores range from 11 to 55 with 11 representing the highest quality-of-life. There are three subscales, namely tension (consisting of four items: appearing physically uncomfortable, irritable, calm, verbalisations suggesting discomfort), sadness (consisting of three items: appearing sad, crying, displaying facial expressions of discomfort) and well-being (consisting of four items: smiling, enjoy eating, being touched and social interaction). These assessments were repeated at the fifth to sixth month postenrolment to determine patients’ symptom severity and quality-of-life on review. Any review assessments done within a year were included in the analyses for comparison with the baseline scores.
The above scales would not be administered for clinically unstable patients who were defined as having a clinician predicted survival of less than 1 month. The Comfort Assessment in Dying with Dementia24 scale would be used instead, the results of which will be reported in a separate study. Patients whose length of service under the homecare programme were less than 2 weeks were also excluded from the analyses of this study as the timeframe would be too short for them to have a meaningful experience of the homecare programme.
Caregiver burden
Psychological morbidity in caregivers at baseline was assessed using the 22-item Zarit Burden Interview (ZBI).25 Each item is rated on a 5-point Likert scale. Total scores range from 0 to 88. A ZBI cut-off score of 24 has been found to identify familial caregivers at risk for depression.26 Factor analysis of ZBI reported a five-factor structure, namely sacrifice and strain (consisting of seven items: affecting social life, privacy, time, stress, health, uncomfortable having friends drop by, uncertainty of the future), inadequacy (consisting of two items: do better and more), embarrassment/anger (consisting of three items: embarrassed of patient’s behaviour, angry with patient, affecting relationship with other family members), dependency (consisting of three items: patient is dependent, asking for more help than needed, having unfair expectations) and loss of control (consisting of four items: unable to take care of patient much longer, uncertain what to do about patient, lost control of life, wish to leave the care to someone else).27
Other data
Demographic data including age, gender, race, mode of feeding and comorbidities assessed using the Charlson Comorbidity Index (CCI)28 were extracted through chart review.
Subgroup analyses
To explore the association between mode of feeding with baseline symptoms and quality-of-life, patients were stratified into enteral feeding and oral feeding. Similarly, to investigate familial caregiver burden, they were stratified based on living arrangement and availability of stay-in help.
Statistical analyses
Background characteristics of patients were described using frequencies and percentages for categorical variables, median and IQR or mean and SD for continuous variables. PAINAD, MNA, NPI-Q, QUALID and ZBI scores were analysed as continuous variables, and presented as total summation scores and by subscales or factors where applicable. Χ2 test and Mann-Whitney U test were used for between-group comparisons of categorical and continuous characteristics respectively. Wilcoxon signed-rank test compared the assessment scores at baseline and at review. A two-sided test with a 0.05 level of significance was assumed. All statistical analyses were performed using IBM SPSS Statistics, V.21.
Results
From October 2014 to November 2018, 458 patients were enrolled into the homecare service. Of these, 254 patients were included into the analyses of this study as they were judged to be clinically stable with a clinician predicted survival of more than a month and were under the care of the homecare team for at least 2 weeks (figure 1).
Flow chart outlining the number of patients enrolled into the homecare service, assessed at baseline and reviewed at fifth month and within a year. LAR, legally appointed representatives; MNA, Mini Nutritional Assessment; NPI-Q, Neuropsychiatric Inventory Questionnaire; PAINAD, Pain Assessment in Advanced Dementia; QUALID, quality of life in late-stage dementia.
Background characteristics
The median age of the 254 patients included in this study was 87 years (IQR 83–93). Slightly more than 70% were females (71.3%) and widowed (70.5%). The majority of ethnic group was Chinese (85.0%). The median age of familial caregivers was 58 years (IQR 53–64) with most of them being children of patients (87.8%). More than two-thirds were staying with patients (68.1%) and the majority had additional stay-in help (90.1%). Alzheimer’s disease was the most common dementia (33.1%), followed by vascular (28.7%) and mixed dementia (24.4%). Patients had been living with dementia for a median of close to 6 years (70.5 months; IQR 42–100). Most were bedbound (47.2%) by the time they were enrolled into the programme with almost half of them on enteral feeding (42.5%). Patients were medically complex with a median CCI score of 8 (IQR 7–10). The median length of survival was about 4 months (median=119.5 days; IQR 50–290) (table 1).
Background characteristics of patients and their familial caregivers
Symptoms and quality-of-life at baseline and stratified by mode of feeding
Close to half of our patients experienced pain (49.2%). The median PAINAD score was 0 (IQR 0–3) with patients on enteral feeding having a higher pain score (median=1; IQR 0–3) than patients on oral feeding (median=0; IQR 0–2), although the difference was not statistically significant (p=0.267).
An overwhelming majority were malnourished (92.5%), with the remainder of patients being at risk of malnutrition (n=19). The median MNA score was 3 (IQR 2–5). There was no statistically significant difference between the MNA scores of patients on oral feeding (median=4; IQR 2–5) and those on enteral feeding ((median=3; IQR 1–5), p=0.262).
Neuropsychiatric challenges were prevalent (85.0%). The median NPI-Q severity score was 3, (IQR 1–7) with patients on enteral feeding having a significantly lower score (median=3; IQR 1–6) than patients on oral feeding ((median=4; IQR 2–7), p=0.004), suggesting that patients on enteral feeding experienced less severe neuropsychiatric issues. The more severe neuropsychiatric problems reported by caregivers were appetite and eating disorders (mean=0.95; SD 1.08), sleep and night-time behaviour challenges (mean=0.75; SD 0.95) and apathy and indifference (mean=0.63; SD 0.94). Correspondingly, the median caregiver distress score was 2 (IQR 0–5) with a significantly lower score for patients on enteral feeding (median=1; IQR 0–4) compared with oral feeding ((median 3; IQR 0–6), p<0.0001).
The median QUALID score was 23 (IQR 19–27). Patients on enteral feeding had a significantly higher QUALID score (median=25; IQR 21–30) than patients on oral feeding (median=21; IQR 17–25), p<0.0001, suggesting a better quality-of-life for those who were fed orally. A significantly higher score was also found on the QUALID well-being subscale (median=14; IQR 12–16 for patients on enteral feeding vs median=10; IQR 8–13 for patients on oral feeding), p<0.0001 but not for the tension and sadness subscales (table 2).
Baseline assessment scale scores of all patients and stratified by feeding status
Comparison of assessment scores pre-enrolment and postenrolment into the homecare programme
Due to the short prognoses, only 53 patients were reassessed within a year using the assessment scales (figure 1). There was a statistically significant improvement in all symptom scores (PAINAD, MNA and NPI-Q severity and caregiver distress) on review. At baseline, close to 85% (n=45) of patients were malnourished and none had normal nutritional status. However, the prevalence of malnourished patients reduced to 74% (n=39) on review with one patient attaining normal nutritional status within 1 year postenrolment into the homecare service. Median QUALID scores also reduced significantly from 23 (IQR 19–30) to 19 (IQR 15–24), p=0.001, indicating a better quality-of-life on review. Significant improvements were also noted on all the QUALID subscales with the exception of the sadness subscale (table 3).
Comparison of baseline and review assessment scale scores for N=53 patients
Caregiver burden
The median ZBI score for the 223 familial caregivers interviewed was 26 (IQR 15–36). Although the difference in total ZBI scores between familial caregivers who lived with patients (median=27.5; IQR 15–38) and those who did not (median=23; IQR 15–33) was not significant (p=0.062), there was a significant difference on the sacrifice and strain factor in particular (median ZBI=9; IQR 5–13 compared with median ZBI=7; IQR 3–10), p=0.013. Availability of stay-in help significantly reduced the median ZBI score from 39.5 (IQR 25–49) to 25 (IQR 15–35), p=0.001 and for all the factors except inadequacy. Familial caregivers who lived with patients had a 1.72 odds (95% CI 0.98 to 3.04) of having a ZBI score at and above 24 than caregivers who lived separately from patients, although this was not significant (p=0.082). On the other hand, the absence of stay-in help placed them at a 3.73 odds (95% CI 1.21 to 11.49) of having a ZBI cut-off score that identifies them at risk of psychological morbidity (p=0.029) (table 4).
Burden score of all familial caregivers and stratified by living arrangement and presence of stay-in help
Discussion
Symptoms such as pain, malnutrition and behavioural issues were prevalent in our patients with advanced dementia living at home. While relying on surrogate observation to gauge symptoms in non-communicative patients may be subject to inaccuracy, a study of pain in community-dwelling persons with dementia shows that caregivers predict pain fairly well.29 Its administration also heightened caregivers’ awareness of patient’s physical gestures and their meanings. Although the symptom severity was mild, their very presence indicated the existence of needs that required addressing as they potentially impacted on patients’ quality-of-life. These results were consistent with the results of other studies which similarly found that distressing symptoms are common in patients with advanced dementia.1 30
Patients’ quality-of-life, particularly their well-being was further compromised by the presence of a feeding tube which did not accord nutritional benefit. Close to 90% of our patients had an albumin level less than 35 g/L and were malnourished even though almost half of them were on enteral feeding. Past studies have found that enteral feeding does not confer survival advantage in advanced dementia,31 nor does it improve their nutritional status or the healing and prevention of pressure ulcers.32–34 These studies usually focused on mortality, aspiration pneumonia, pressure sores, nutritional parameters and quality-of-life as outcomes.35 Hence, the relatively higher proportion of our patients on enteral feeding compared with US nursing home residents (at most 40%)36 is a cause for concern. Careful oral feeding takes time, and it can be labour-intensive and challenging due to the more severe behavioural issues experienced by orally fed patients (as reflected by the higher NPI-Q severity scores). However, as enteral feeding affected their quality-of-life, caregivers should be empowered with the appropriate knowledge and feeding strategies to continue oral feeding for as long as possible.
In our programme, we used dementia-specific assessment tools to focus on patients’ physical symptoms and quality-of-life so that palliative interventions could be instituted. Although the number of patients reviewed with the assessment scales postenrolment was small due to the short prognoses, our homecare programme helped reduce the severity of behavioural issues as well as improve their nutritional status and quality-of-life. The multidisciplinary homecare team with geriatric and palliative expertise achieved this by providing timely advice, and empowering caregivers with the knowledge and skills to use pharmacological and non-pharmacological measures to manage patients’ dementia-specific and end-of-life symptoms. The homecare team was accessible throughout the day and provided an emergency helpline to give advice and support after office hours. The close collaboration between the homecare, hospital and hospice teams allowed patients to transit directly to the hospital and hospice if appropriate, avoiding unnecessary interventions and investigations at this stage of the illness. This seamless integration of care among the three healthcare settings allowed for faster access to advice and support, care continuity and ultimately a more judicious use of healthcare resources.
Providing quality end-of-life care for patients with dementia at home where caregivers are not professionally trained can be challenging due to the difficulty assessing their distress and outcomes of intervention. The familial caregivers in our study experienced mild-moderate burden caring for their loved ones with advanced dementia at home. In particular, sacrifices had to be made for caregivers staying with their loved ones with dementia. Caregivers who did not have additional stay-in help experienced heavier burden, reflecting patients’ high care needs. It also put them at a higher risk for psychological morbidity. With additional help, this burden could be partially ameliorated as reflected by a lower level of burden reported. Physical help is thus important to prevent burnout and ensure care continuity at home. With an ageing population and the corresponding exponential increase in dementia prevalence, policy changes are required to provide families with more support. This can come in the form of financial assistance for families to engage more physical help, increase the availability of part-time elder-sitters to relieve carers for a few hours each day and allocate caregiving allowances to alleviate any financial difficulty. Mandatory parental care leave can also be instituted37 or be increased to benefit those who are juggling work and caregiving duties simultaneously. This legitimises caregiving in the workplace and society and provides them with more time to participate meaningfully in the care of their loved ones, ensuring its sustainability.
Strengths and limitations
There has been a lack of studies investigating end-of-life care for individuals with advanced dementia staying at home,16 with this being one of the few studies examining the clinical benefits of an integrated care model for home-dwelling patients with advanced dementia. It may thus inform policy-makers the elements required for such a care model to succeed. Importantly, pertinent information such as the composition and skills and the operational structure of the multidisciplinary homecare team, the collaborative framework established with other healthcare settings, the dementia-specific assessments used and their administration timeframe were reported, so appropriate adjustments to these elements can be made for adoption in other settings.
This study has its limitations. There is a lack of a control cohort for between-group comparison of outcomes. However, as the main objective of the programme is to provide a homecare service for advanced dementia, it would not be tenable to deny it to patients in the absence of a comparable homecare service. This was compensated for by adopting a within-group comparison. Based on our understanding of the dementia disease trajectory where symptoms are increasingly prevalent as patients approach the final months and weeks of life,1 30 the improvements in symptoms and quality-of-life within a year could likely be attributed to the interventions provided by the homecare service.
As the assessors rating patients’ symptoms and quality-of-life were the very clinicians and caregivers involved in their care, it was not possible to blind them, which might have resulted in assessor bias when evaluating the clinical outcomes of the programme. However, as they were the most familiar with patients, they would thus be well poised to detect any changes in symptoms and quality-of-life in our group of patients who were not able to express themselves verbally.
Review assessments were designed to be administered at least five to 6 months after enrolment. However, the number of patients with repeat assessments done were limited due to the short prognoses of our patients. Three months may be a more appropriate timeframe for repeat assessments.
Investigating the factors associated with caregiver burden was not the primary objective of this study. Confounding variables were not collected nor adjusted for which may overestimate the effect that the absence of stay-in help have on caregiver burden. However, the magnitude of the effect may nullify this limitation. Future study should comprehensively evaluate the factors associated with caregiver burden as their involvement is crucial to realising the option of care at home.
Patients who were actively dying with a clinician predicted survival of less than a month were excluded from the analyses of this study, limiting our understanding of the impact of the homecare service for this group of patients whose medical conditions and characteristics might differ. Future studies should evaluate the clinical outcomes for this group of patients.
Conclusion
The needs of home-dwelling patients with advanced dementia can be met by interventions delivered in a coordinated manner between the hospital, hospice and home by a palliative homecare team with dementia training. Besides reaping benefits through potential reductions in healthcare utilisation, integrating such a model of care into usual practice for advanced dementia will better address patients’ needs, improve their quality-of-life and provide support for families who wish to care for them at home.
Acknowledgments
The authors would like to acknowledge the homecare team for caring and supporting our patients and families, Dover Park Hospice for supporting the running of the programme, and Ms Yoong Jia Horng for her administrative management of the programme.
References
Footnotes
Contributors AH and MK conceptualised the programme. AH, JJC, AL and MK obtained the funding for the programme. AH, RYT and YW analysed the data, interpreted the results and drafted the manuscript. All authors revised the manuscript and approved the final version.
Funding This programme was made possible with funding from Temasek Foundation Cares CLG Limited (Grant number: TC-APP-3-39).
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval This study was approved by the ethics review board of the National Healthcare Group Singapore (2014/00577).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Data are available upon reasonable request.