Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan.

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Importance of Distinguishing Reactive and Proactive Aggression in Dementia Care.

Aggressive behavior is one of the most disturbing symptoms of Alzheimer disease and other progressive neurodegenerative dementias. Development of strategies for management of aggressive behaviors in people with dementia is hindered by a lack of recognition that aggression is not a uniform behavioral construct. It is possible to distinguish 2 types of aggression: reactive or impulsive aggression and proactive or premeditated aggression. Research concerning aggressive behaviors in people with dementia is hindered by scales describing behavioral symptoms of dementia which do not distinguish between reactive and proactive aggressions because they do not consider the factors leading to these behaviors. Reactive aggression is caused by lack of understanding, leading to rejection of care, while proactive aggression could be caused by a psychopathic personality, hallucinations or delusions, and other determinants. It is difficult to underestimate the importance of distinguishing reactive and proactive aggressions in people with dementia because there are different strategies that can be used for management of these behaviors. For reactive aggression, delayed treatment, distraction, improved communication, and change in treatment strategy is useful, while antipsychotic medication may be needed for treatment of proactive aggression. Dementia is increasing the risk of both types of aggressions and antidepressant treatment can be helpful. Most importantly, persons exhibiting reactive aggression should not be labeled "aggressors" because this behavior could be caused by unmet persons' needs, pain and poor communication with care providers.

Prevalence of psychotropic polypharmacy in nursing home residents with dementia: a meta-analysis.

OBJECTIVES: Nursing home (NH) residents with dementia is exposed to high rates of psychotropic prescriptions. Our objectives were to: (1) pool the prevalence estimates of psychotropic polypharmacy from the existing literature and (2) examine potentially influential factors that are related to a higher or lower prevalence. DESIGN: Meta-analysis of data collected from randomized trials, quasi-experimental, prospective or retrospective cohort, and cross-sectional studies. English-language searches of PubMed and PsycINFO were completed by November 2020. Included studies reported prevalence estimates of psychotropic polypharmacy (i.e. defined as either two-or-more or three-or-more medications concurrently) in NH residents with dementia. SETTING AND PARTICIPANTS: NH residents with dementia. MEASUREMENTS: Random-effects models were used to pool the prevalence of psychotropic polypharmacy in NH residents with dementia across studies. Estimates were provided for both two-or-more and three-or-more concurrent medications. Heterogeneity and publication bias were measured. Meta-regression examined the influence of the percentage of the sample who were male, mean age of the sample, geographic region (continent), sample size, and study year on the prevalence of psychotropic polypharmacy. RESULTS: Twenty-five unique articles were included comprising medications data from 92,370 NH residents with dementia in 12 countries. One-in-three (33%, [95% CI: 28%, 39%]) NH residents with dementia received two-or-more psychotropic medications concurrently. One-in-eight (13%, [95% CI: 10%, 17%]) received three-or-more psychotropic medications concurrently. Estimates were highly variable across both definitions of psychotropic polypharmacy (p < 0.001). Among study-level demographics, geographic region, sample size, or study year, only male sex was associated with greater use of two-or-more psychotropic medications (Unadjusted OR = 1.02, p = 0.006; Adjusted OR = 1.04, p = 0.07). CONCLUSIONS: Psychotropic polypharmacy is common among NH residents with dementia. Identifying the causes of utilization and the effects on resident health and well-being should be prioritized by federal entities seeking to improve NH quality.

Cognitive deficits in Parkinson's disease with excessive daytime sleepiness: a systematic review.

Objectives: This systematic review synthesizes the most recent literature on neuropsychological deficits in adults with Parkinson's disease who experience excessive daytime sleepiness (EDS). Confounds and methodological limitations are explored. A framework entitled the Cascade Model of Excessive Daytime Sleepiness (CMEDS) is proposed to explain the role of EDS in contributing to cognitive impairment for patients with Parkinson's disease.Method: Systematic search through PubMed, PsychInfo and citation records. In total, 175 articles were screened for possible inclusion. Eight studies were included, encompassing 1373 patients with Parkinson's disease - 442 of whom had Parkinson's disease with EDS.Results: For Parkinson's disease patients with EDS, global deficits, executive dysfunction and deficits in processing speed were found beyond the typical cognitive phenotype of patients without EDS. Language skills, memory and visuospatial skills appeared to be similar between those with and without EDS. In untreated, de novo, patients, there were no cognitive differences between the EDS groups.Conclusion: This review suggests that Parkinson's disease patients suffering from EDS may have additional cognitive deficits globally, in executive control, and in processing speed. As suggested by the CMEDS framework, the impact of EDS on cognition may be related to Parkinson's disease pathology, comorbidities and medication use.

Physiological and pathological functions of beta-amyloid in the brain and alzheimer's disease: A review.

Alzheimer's disease is a major health problem all over the world. The role of beta-amyloid (Aß) is at the center of investigations trying to discover the disease pathogenesis and to develop drugs for treatment or prevention on Alzheimer's disease. This review summarizes both physiological and pathological functions of Aß and factors that may participate in the disease development. Known genetic factors are trisomy of chromosome 21, mutations of presenilin 1 and 2, and apolipoprotein E4. Lifetime stresses that increase the risk of development of Alzheimer's disease are described. Another important factor is the level of education, especially of linguistic ability. Lifestyle factors include mental and physical exercise, head injury, social contacts, and diet. All these factors might potentiate the effect of aging on the brain to increase the risk of development of pathological changes. The review summarizes pathological features of Alzheimer brain, Aß plaques, neurofibrillary tangles composed of hyperphosphorylated tau, and brain atrophy. Consequences of Alzheimer's disease that are reviewed include cognitive deficit, loss of function, and neuropsychiatric symptoms. Because there is no effective treatment, many persons with Alzheimer's disease survive to severe and terminal stages which they may fear. Alzheimer's disease at this stage should be considered a terminal disease for which palliative care is indicated. Importance of advance directives, promoting previous wishes of the person who was developing dementia and who subsequently lost decision-making capacity, and limitations of these directives are discussed. Information in this review is based on author's knowledge and clinical experience that were updated by searches of PubMed.

Measurement of agitation and aggression in adult and aged neuropsychiatric patients: review of definitions and frequently used measurement scales.

Agitation and aggression in adult psychiatric patients with psychoses and in persons with dementia increase the burden of disease and frequently cause hospitalization. The implementation of currently available management strategies and the development of new ones is hindered by inconsistent terminology that confuses agitation with aggression. This confusion is maintained by many rating scales that fail to distinguish between these two syndromes. We review the frequently used rating scales with a particular focus on their ability to separate agitation from aggression. Agitation and aggression are two different syndromes. For example, reactive aggression is often precipitated by rejection of care and may not be associated with agitation per se. We propose, in treatment studies of behavioral symptoms of dementia and challenging behaviors in psychoses, that outcomes should be evaluated separately for agitation and aggression. This is important for investigation of drug effectiveness since the medication may be effective against one syndrome but not the other. Separate assessments of agitation and aggression should be a general principle of trial design with particular salience for registration studies of medications proposed for approval by the U.S. Food and Drug Administration and other regulatory bodies.

Achieving consensus and controversy around applicability of palliative care to dementia.

BACKGROUND: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. METHODS: To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. RESULTS: Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. CONCLUSIONS: Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.

The Namaste Care programme can reduce behavioural symptoms in care home residents with advanced dementia.

OBJECTIVE: The objective of the study was to evaluate the effects of the Namaste Care programme on the behavioural symptoms of residents with advanced dementia in care homes and their pain management. METHODS: Six dementia care homes collaborated in an action research study-one withdrew. Inclusion criteria were a dementia diagnosis and a Bedford Alzheimer's Nursing Severity Scale score of >16. Primary research measures were the Neuropsychiatric Inventory-Nursing Homes (NPI-NH) and Doloplus-2 behavioural pain assessment scale for the elderly. Measures were recorded at baseline and at three 1-2 monthly intervals after Namaste Care started. RESULTS: Management disruption occurred across all care homes. The severity of behavioural symptoms, pain and occupational disruptiveness (NPI-NH) decreased in four care homes. Increased severity of behavioural symptoms in one care home was probably related to poor pain management, reflected in increased pain scores, and disrupted leadership. Comparison of NPI-NH scores showed that severity of behavioural symptoms and occupational disruptiveness were significantly lower after initiation of Namaste Care (n = 34, p < 0.001) and after the second interval (n = 32, p < 0.001 and p = 0.003). However, comparison of these measures in the second and third intervals revealed that both were slightly increased in the third interval (n = 24, p < 0.001 and p = 0.001). CONCLUSIONS: Where there are strong leadership, adequate staffing, and good nursing and medical care, the Namaste Care programme can improve quality of life for people with advanced dementia in care homes by decreasing behavioural symptoms. Namaste is not a substitute for good clinical care.

Palliative care and quality of life for people with dementia: medical and psychosocial interventions.

BACKGROUND: Despite mounting evidence that principles of palliative care are appropriate in care for individuals with dementia they are often not applied. As a result, patients with dementia are often exposed to burdensome interventions that have little or no benefit and are not provided with psychosocial treatments. METHODS: Recommendations for applying palliative care principles in caring for people with dementia are provided, based on the WHO definition of palliative care, our clinical experience and some key literature reports. RESULTS: People with a diagnosis of an irreversible dementia such as Alzheimer's disease (AD) and their families are rarely informed that this is a terminal disease and palliative care principles are not discussed with them. They are applicable early in the course of illness when the person can still make end-of-life decisions. Palliative care can be used in conjunction with other therapies and services, such as hospice care that provide relief from pain and other distressing symptoms. The care should include keeping people with dementia involved in meaningful activities which decrease or eliminate behavioral symptoms of dementia. CONCLUSIONS: Educating families and professionals about palliative care is important as many professionals and non-professionals believe that this approach intends to hasten death, instead of affirming life and regarding dying as a normal process. Living, not just existing, with a dementing illness involves encouraging the person to continue to be involved in meaningful activities. Medical interventions should be compatible with goals of care and balance benefits and burdens for each intervention taking into consideration severity of dementia.

White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.

BACKGROUND: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. AIM: To define optimal palliative care in dementia. METHODS: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. RESULTS: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. CONCLUSION: We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

Involvement in activities and wandering in nursing home residents with cognitive impairment.

OBJECTIVES: Analysis of a relationship between wandering and involvement in meaningful activities in nursing home residents with cognitive impairment. DESIGN: Cross-sectional analysis of the minimum data set information. SETTING: The analyses were conducted on 8 nursing homes in the Netherlands. PARTICIPANTS: The participants were residents aged 65 years and above with an evidence of cognitive impairment. MEASUREMENTS: Items in the minimum data set related to wandering behavior, involvement in activities, presence of psychotic symptoms, and treatment with antipsychotics. Ambulatory residents who exhibited wandering were divided into: those whose behavior was easily altered [modifiable wandering (MW)] and those whose wandering behavior was not easily altered by the staff [nonmodifiable wandering (NMW)]. The duration of time for which they had opportunity to be involved in meaningful activities was estimated from involvement in activities of nonambulatory residents. RESULTS: The prevalence of wandering increased with severity of cognitive impairment. MW was present in 3.5% of total residents (8.5% of ambulatory), whereas NMW was present in 11.2% of the total ambulatory and nonambulatory residents (26.6% of ambulatory). The risk of NMW was increased with resistiveness to care and decreased with antipsychotic use. Individuals with NMW were less involved in activities. NMW was more prevalent in facilities in which residents were involved in activities for a shorter duration. CONCLUSIONS: Involvement of residents in meaningful activities should be tested for reducing the incidence of problematic wandering and for decrease in usage of antipsychotic medications.

Behavioral problems of seniors in an emergency department.

BACKGROUND: Behavioral disorders are frequent in seniors with cognitive impairments. The ailment responsible for presentation to the Emergency Department (ED), in combination with preexisting conditions, can bring about a temporary cognitive disturbance or worsen an existing cognitive disturbance, thus increasing the frequency of behavioral disorders. STUDY OBJECTIVES: The purpose of this research was to investigate whether there is any connection between pain, cognitive impairment, time in the ED, presence or absence of a supportive escort, and behavioral disorders exhibited by a senior. METHODS: The study sample consisted of 140 seniors aged 69 years and older who visited the ED. Data collected included personal data, presence or absence of an escort, length of stay in the ED, and formal reproducible evaluation of cognition, behavior, and pain. RESULTS: Behavioral disorders were found to be present in 18% of the total sample and in 25% of the group of seniors who suffered from cognitive impairment. The presence of cognitive impairment was found to increase by almost sevenfold the risk of a behavioral disorder. Presence of severe pain increased the risk of a behavioral disorder even more (odds ratio 63). Seniors with cognitive impairment who spent a longer-than-average time period in the ED exhibited behavioral disorders that were more severe than disorders in seniors without cognitive impairment. There was no moderating effect on behavioral disturbances by the presence of a supportive escort observed. CONCLUSIONS: The findings of this study suggest that the risk of behavioral disorders in seniors attending the ED may be predicted by screening them for cognitive impairment and pain, and by monitoring the time period they are in the ED.

The clinical course of advanced dementia.

BACKGROUND: Dementia is a leading cause of death in the United States but is underrecognized as a terminal illness. The clinical course of nursing home residents with advanced dementia has not been well described. METHODS: We followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. Data were collected to characterize the residents' survival, clinical complications, symptoms, and treatments and to determine the proxies' understanding of the residents' prognosis and the clinical complications expected in patients with advanced dementia. RESULTS: Over a period of 18 months, 54.8% of the residents died. The probability of pneumonia was 41.1%; a febrile episode, 52.6%; and an eating problem, 85.8%. After adjustment for age, sex, and disease duration, the 6-month mortality rate for residents who had pneumonia was 46.7%; a febrile episode, 44.5%; and an eating problem, 38.6%. Distressing symptoms, including dyspnea (46.0%) and pain (39.1%), were common. In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding). Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in advanced dementia were much less likely to have burdensome interventions in the last 3 months of life than were residents whose proxies did not have this understanding (adjusted odds ratio, 0.12; 95% confidence interval, 0.04 to 0.37). CONCLUSIONS: Pneumonia, febrile episodes, and eating problems are frequent complications in patients with advanced dementia, and these complications are associated with high 6-month mortality rates. Distressing symptoms and burdensome interventions are also common among such patients. Patients with health care proxies who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.

Relationship between symptoms of depression and agitation in nursing home residents with dementia.

OBJECTIVE: The aim of this study is to analyze modifiable factors related to agitation of nursing home residents with dementia. METHODS: Relationship of agitation with three modifiable factors (depression, psychosis, and pain) was explored using longitudinal Minimum Data Set (MDS) information from 2032 residents of Dutch nursing homes. Presence of agitation and depression was ascertained using validated scales based on MDS information. Presence of psychosis and pain was ascertained from the individual MDS items. RESULTS: There was a significant correlation between MDS depression and agitation scores. Depression scores increased in residents whose agitation worsened and decreased in residents whose agitation improved. Psychosis scores (combination of delusions and hallucinations) also correlated with MDS depression scores, and psychosis scores increased in residents whose agitation worsened. Pain scores correlated with agitation scores, but the pain scores did not change with changes in agitation. Depression symptoms were present in 51% of residents, while psychotic symptoms were present only in 15% of residents, and two-thirds of these residents were also depressed. CONCLUSION: These results indicate that depression may be the most common factor associated with agitation in nursing home residents with dementia.

Geriatric Depression and Inappropriate Medication: Benefits of Interprofessional Team Cooperation in Nursing Homes.

An investigation of inappropriate medication use in treatment of depressivity in institutionalized older adults, based on a nurse-led evaluation of functional status and depressive symptoms in nursing home residents. Methods: A cross-sectional multicenter study was performed using records from 1087 residents cared for in fifteen nursing homes (NHs) in the Czech Republic. Inclusion criteria were being a permanent resident of one of the facilities, being 60 years of age or older, having a Geriatric Depression Scale score of 6 or more, and having a Mini Mental State examination score 10 or more. The final sample for analysis included 317 depressed NH residents. Results: 52 percent of NH residents with depressivity had no antidepressant treatment. Benzodiazepines were the only medication in 16 percent of depressed residents, and were added to antidepressant treatment in 18 percent of residents. Benzodiazepine users had significantly higher GDS scores compared to non-users (p = 0.007). Conclusion: More than half of depressed NH residents remained without antidepressant treatment. Residents inappropriately treated with benzodiazepines were more depressed than residents treated with antidepressants only, or even not treated at all. Cooperation of the interprofessional team in the screening of depressive symptoms has the potential to improve the quality of care.

Palliative Care in Advanced Dementia: Comparison of Strategies in Three Countries.

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), The Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and The Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in The Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in The Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in The Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.

Evaluating the feasibility and acceptability of the Namaste Care program in long-term care settings in Canada.

BACKGROUND: Residents living and dying in long-term care (LTC) homes represent one of society's most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the feasibility, acceptability, and effects of Namaste Care: an innovative program to improve end-of-life care for people with advanced dementia. METHODS: This study used a mixed-method survey design to evaluate the Namaste Care program in two LTC homes in Canada. Pain, quality of life, and medication costs were assessed for 31 residents before and 6 months after they participated in Namaste Care. The program consisted of two 2-h sessions per day for 5 days per week. Namaste Care staff provided high sensory care to residents in a calm, therapeutic environment in a small group setting. Feasibility was assessed in terms of recruitment rate, number of sessions attended, retention rate, and any adverse events. Acceptability was assessed using qualitative interviews with staff and family. RESULTS: The feasibility of Namaste Care was acceptable with a participation rate of 89%. However, participants received only 72% of the sessions delivered and only 78% stayed in the program for at least 3 months due to mortality. After attending Namaste Care, participants' pain and quality of life improved and medication costs decreased. Family members and staff perceived the program to be beneficial, noting positive changes in residents. The majority of participants were very satisfied with the program, providing suggestions for ongoing engagement throughout the implementation process. CONCLUSIONS: These study findings support the implementation of the Namaste Care program in Canadian LTC homes to improve the quality of life for residents. However, further testing is needed on a larger scale.

Dorsomedial SCN neuronal subpopulations subserve different functions in human dementia.

The suprachiasmatic nuclei (SCN) are necessary and sufficient for the maintenance of circadian rhythms in primate and other mammalian species. The human dorsomedial SCN contains populations of non-species-specific vasopressin and species-specific neurotensin neurons. We made time-series recordings of core body temperature and locomotor activity in 19 elderly, male, end-stage dementia patients and 8 normal elderly controls. Following the death of the dementia patients, neuropathological diagnostic information and tissue samples from the hypothalamus were obtained. Hypothalamic tissue was also obtained from eight normal control cases that had not had activity or core temperature recordings previously. Core temperature was analysed for parametric, circadian features, and activity was analysed for non-parametric and parametric circadian features. These indices were then correlated with the degree of degeneration seen in the SCN (glia/neuron ratio) and neuronal counts from the dorsomedial SCN (vasopressin, neurotensin). Specific loss of SCN neurotensin neurons was associated with loss of activity and temperature amplitude without increase in activity fragmentation. Loss of SCN vasopressin neurons was associated with increased activity fragmentation but not loss of amplitude. Evidence for a circadian rhythm of vasopressinergic activity was seen in the dementia cases but no evidence was seen for a circadian rhythm in neurotensinergic activity. These results provide evidence that the SCN is necessary for the maintenance of the circadian rhythm in humans, information on the role of neuronal subpopulations in subserving this function and the utility of dementia in elaborating brain-behaviour relationships in the human.

Review of Programs for Persons Facing Death with Dementia.

BACKGROUND: Persons with advanced dementia cannot initiate activities because of the executive dysfunction. The lack of activities was identified as one of the most important factors contributing to behavioral problems of these persons. The unmet needs were boredom/sensory deprivation, loneliness/need for social interaction, and need for meaningful activities. There is a need for activities designed specifically for residents with advanced dementia. OBJECTIVE: A description of patient's needs and of programs that intend to maintain quality of life for people with dementia and facing death. DATA SOURCES: A literature review of programs used for persons with advanced dementia and residing in long-term facilities, using the PubMed data base and collateral sources. RESULTS: Since palliative care is appropriate for persons with advanced dementia, attention has to be paid to three following important aspects of care: Medical issues, behavioral symptoms, and meaningful activities. Medical interventions should be limited to those which have more benefits than burdens, behavioral symptoms should be distinguished according to the context in which they occur, and treated by non-pharmacological interventions that involve meaningful activities. This review describes four programs that may promote the quality of life in persons with advanced dementia and facing death. They are designed for persons with advanced dementia, taking into account their functional impairments. Most of these programs involve short infrequent sessions. In contrast, Namaste Care is a daily extended program of enhanced nursing care that can provide quality of life until the last breath. CONCLUSIONS: It is possible to maintain quality life for people with advanced dementia if a special program of activities is available.