Functional Status of Older Adults with Dementia at the End of Life: Is there Still Anything to do?

INTRODUCTION

Today, dementia is an important public health challenge.[12] The longer the life of people, the more likely they are demented.[1] The number of people with dementia is growing rapidly, and this disease is estimated to be more than 35 million people worldwide.[2] Participants with dementia have shorter life span and higher mortality rate than the general population due to the severity of disease and comorbid conditions.[3] However, understanding of the specific causes of death in patients with dementia may be beneficial in improving prognosis and establishing appropriate care plans.[45]

The investigation and identification of predictors of mortality in these patients are a critical perspective in the management of this population.[6] Of those, functional limitations have been shown to predict worse health outcomes and mortality in older people.[78] Assessment of functional status has been, particularly targeted for the evaluation of older adults with dementia because functionality refers to current health status, psychological well-being, and the need for supportive care.[9] Inconsistent results have been obtained from previous studies that have examined the relationship between functionality and mortality in patients with dementia.[1011] A prospective observational study conducted in ten nursing homes in the USA reported that residents who died were more commonly physically restraint in bed in comparison with those who survived up to 3 months before death.[11] Furthermore, there is a lack of data on physical functional status near death of patients with different types of dementia that can contribute to decisions about what kind of care is needed. Providing appropriate end-of-life care may improve the comfort and quality of life in these patients and thus decrease caregiver stress.[12]

Causes of death in chronic conditions including dementia may differ across countries or regions due to many reasons. The prevalence of dementia is estimated to be around 8.5% in the elderly population in Turkey,[13141516] but there is limited information on the causes of death among these patients. Based on data from prevalence and incidence studies, dementia-related mortality rates increase dramatically in all regions worldwide.[110]

Focusing on functionality in the care of older adults is a critical issue. Maintaining activities of the person as much as possible may improve the quality of life and may also contribute significantly to outcomes in health care during the death process. In this study, we investigated the course of functional status along with the documented reasons for death in participants with dementia who had regularly been followed at a geriatric outpatient unit.

SUBJECTS AND METHODS

RESULTS

The study included 258 patients. Of those, 111 patients' death was recorded, and they were studied in the final analyses. Participants with missing data (n = 147, 57.0%) were excluded. Table 1 shows the characteristics of participants. The mean age at death was 82.0 ± 6.2 years; 62.2% of the participants were male. Female participants had higher mean BMI than male participants at the diagnosis of dementia (P = 0.001). Mean age at death was similar in both gender (83.4 ± 5.7 in female and 81.2 ± 6.3 in male, P = 0.077); however, there was a difference in age categories (P = 0.041). The rate of diabetes mellitus, hypertension, stroke, coronary artery disease, and COPD did not differ in both groups.

AD was the leading cause of dementia (51.8%). MMSE score at the diagnosis of dementia was lower in females (P = 0.022). The majority of participants at the diagnosis of dementia was CDR 1 (mild dementia). The median duration of survival with dementia was 4 (0–12) years. Overall, the leading causes of death were cardiovascular disease (27.0%) and dementia (27.0%) followed by infection (21.6%) and stroke (10.8%).

Although statistically not significant, the DLB/PDD group had the lowest mean score of BADLs and the greatest prevalence of participants with high risk for functionality (64.7%) among dementia groups (P = 0.381 and P = 0.080, respectively). Although IADLs scores did not differ by dementia subgroups, there was a tendency toward a decrease in those of the DLB/PDD group (P = 0.079) [Table 2].

Cardiovascular disease in patients with AD (35.1%), dementia in those with MXD (28.6%), and infection in those with DLB/PDD (35.2%) were the most common causes of death (the percentage in VaD group not given due to small sample size) [Table 3].

DISCUSSION

Functional disability in patients with dementia is a progressive and detrimental process together with increase in impairment of cognition and behavioral problems. The predeath cognitive impairment was often studied in various studies. The present study investigated the predeath last status in basic and instrumental activities in these patients. Our findings suggest that physical performance tended to be lower in DLB/PDD group in the last visit before death. The main difference between our study and other studies was how functional impairment is seen at predeath in terms of different types of dementia.

After the mild stage of dementia is passed, functional impairment is expected due to the natural progress of disorder. Previous studies examining the relationship between functional impairment and mortality in dementia have shown inconsistent results. In a community-based prospective cohort of 1670 older adults, IADL impairment was found as a significant predictor of mortality in AD patients.[24] Likewise, according to the results of PRIME longitudinal study, functional impairment at baseline and greater decline in function over 6 months predicted mortality in patients with dementia.[25] In contrast, a recent study demonstrated that the level of activities of daily living was not associated with the risk of mortality in a relatively young cohort of AD patients with a mean age of 67 years.[26] Moreover, functional status was demonstrated not to be associated with mortality in a small sample of nursing home residents.[11] Overall, different types of dementia, age, and sample size may be underlying reason for variations in research findings. Thus, it is important to identify the underlying specific dementia type which may have different clinical features, course, and prognosis. Therefore, our research is original that indicates DLB/PDD patients seem as the most influenced population of dementia by disability before death although statistical significance of this is not.

There is a growing interest in the implementation of care approaches in dementia in recent years.[2728] The goal of establishing appropriate care plans by health-care providers is a constantly updated issue during the diagnosis of dementia and the course of the disease. However, medical and physical management of dementia patients near death can vary among patients depending on the progression of the disease and also on its subtype.[293031]

Remarkably, the addition of disability in DLB/PDD patients in the advanced stage of disease may lead to more complicated and challenging care.[3233] Our findings suggest that the tendency for function to decline in DLB/PDD group before death may provide several important contributions to the care management plans. For example, it may be considered that the patient's life will end soon. In this case, in turn, drugs without indications may be discontinued. These patients may obtain benefit from physiotherapy in a palliative care setting. In addition, care plans can be revisited, and the increased caregiver burden can be attempted to be relieved.[34] Appropriate placement in group psychotherapy may alleviate discomfort due to dementia in caregivers.[35]

Similar to other studies, cardiovascular causes (27.0%) and dementia (%27.0) were the most common underlying causes of death in the whole group, followed by infections (21.6%).[143637] In our study, mortality from infections was high in DLB/PDD group (35.2%), as shown in another research and based on respiratory infections; however, little is known about the main causes of death in this population.[14] DLB has motor features of Parkinsonism which trigger respiratory muscle weakness, leading to decreased cough and impaired swallowing. Given this comorbidity, our result may be useful for further studies in the development of care plans which aim at decreasing the risk of infection in DLB patients.

Several limitations of the present study should be acknowledged. The retrospective design might introduce selection bias into results. The second limitation was the lack of a control group; however, different dementia subtypes allowed us to create comparison groups. Third, the sample size of the total group was small, and the number of participants in VaD group was few.

CONCLUSIONS

Our findings from a Turkish geriatric unit underline the importance of screening functional performance and administering appropriate care plan in dementia, particularly in patients with DLB or PDD. Providing appropriate care is complex management at advanced stages of dementia patients. This could help reduce suffering of patient and be critical for the family and caregivers to be aware of the progression of this disease and to prepare for the death of loved ones.

Further longitudinal studies are needed to identify the underlying reasons for variations in the trend of decrease in functionality before death among dementia subtypes. Just as important is to develop and test a tailored management plan with families and caregivers that can enhance functional limitations and quality of life at the end of life in different types of dementia.