End-of-life care and dementia

In the UK, research continues to confirm that people with certain chronic illnesses, such as chronic lung disease and cardiac failure, represent the ‘disadvantaged dying’ compared to those with terminal cancer. But what is the situation for people dying with advanced dementia and what is the experience of their carers? Practical guidance for clinicians is scarce. In Standard 7 of the National Service Framework for Older People, which covers mental health, there is mention neither of how care should be provided nor of how patient choice should be ensured for people with dementia at the end of life. In the UK, 5% of the population aged 65 and over and 20% of those aged 80 and over have dementia similar prevalence figures are found in the USA. Current predictions suggest that the number of people with dementia will increase by 40% by 2026 and will double by 2050. The increased demand for end-of-life care for people with dementia will be associated with major social and economic costs, but what is the current standard of such care? How can the quality be improved? And how should future services be configured to cope with this increasing need? In this paper, we review current knowledge around end-of-life care in dementia, discuss the clinical challenges and ethical dilemmas presented to carers, consider the difficulties in delivering such care and suggest practical approaches to improve the quality of such care

Implementing the Namaste Care Program for residents with advanced dementia:exploring the perceptions of families and staff in UK care homes

Background: Increasing numbers of older people with advanced dementia are cared for in care homes. No cure is available, so research focused on improving quality of life and quality of care for people with dementia is needed to support them to live and die well. The Namaste Care programme is a multi-dimensional care program with sensory, psycho-social and spiritual components intended to enhance quality of life and quality of care for people with advanced dementia. The aim of the study was to establish whether the Namaste Care program can be implemented in UK care homes; and what effect Namaste Care has on the quality of life of residents with advanced dementia, their families and staff. This article explores the qualitative findings of the study, reporting the effect of the programme on the families of people with advanced dementia and care home staff, and presenting their perceptions of change in care. Methods: An organisational action research methodology was used. Focus groups and interviews were undertaken pre/post implementation of the Namaste Care program. The researcher kept a reflective diary recording data on the process of change. A comments book was available to staff and relatives in each care home. Data was analysed thematically within each care home and then across all care homes. Results: Six care homes were recruited in south London: one withdrew before the study was underway. Of the five remaining care homes, four achieved a full Namaste Care program. One care home did not achieve the full program during the study, and another discontinued Namaste Care when the study ended. Every home experienced management disruption during the study. Namaste Care challenged normal routinised care for older people with advanced dementia. The characteristics of care uncovered before Namaste was implemented were: chaos and confusion, rushing around, lack of trust, and rewarding care. After the programme was implemented these perceptions were transformed, and themes of calmness, reaching out to each other, seeing the person, and, enhanced well-being, emerged. Conclusions: Namaste Care can enrich the quality of life of older people with advanced dementia in care homes. The program was welcomed by care home staff and families, and was achieved with only modest expenditure and no change in staffing levels. The positive impact on residents quality of life influenced the well-being of family carers. Care staff found the changes in care enjoyable and rewarding. Namaste Care was valued for the benefits seen in residents; the improvement in relationships; and the shift towards a person-centred, relationship-based culture of care brought about by introducing the program. Namaste Care deserves further exploration and investigation including a randomised controlled trial

Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes

BACKGROUND: The End-of-Life in Dementia (EOLD) scales comprise the most specific set of instruments developed for evaluations of patients' end of life by their families. It is not known whether the EOLD scales are useful for cross-national comparisons. METHODS: We used a mortality follow-back design in multi-center studies in the Netherlands (pilot study 2005-2007) and the U.S.A. (1999), and we compared EOLD Satisfaction With Care (SWC; last three months of life), Symptom Management (SM; last three months) and Comfort Assessment in Dying (CAD) scores for 54 Dutch and 76 U.S. nursing home residents. RESULTS: SWC total scores did not differ significantly between the Dutch and U.S. studies (31.9, SD 4.7 versus 30.4, SD 6.1), but three of ten items were rated more favorable for Dutch residents, as were SM total scores (29.1, SD 9.2 versus 20.4, SD 10.6). CAD total scores did not differ (32.0, SD 5.4 versus 30.5, SD 5.9, respectively), but the "well-being" subscale was rated more favorably for Dutch residents. Results were similar after adjustment for demographics and dementia severity. CONCLUSION: The Dutch families rated end of life with dementia in nursing homes as somewhat better than did U.S. families. Although differences were small, the observed patterns were consistent. This suggests validity of the SM and CAD to assess differences in quality of dying and possible sensitivity to differences between countries or time frames. Larger, simultaneous, cross-national studies are needed to confirm usefulness of the scales and to detect areas which need improvement in the respective countrie

Neurobiological Differences Between Aggression and Agitation in Persons with DementiaAffiliation

Background: Controversy exists about definition of agitation and especially about inclusion of aggression as a part of agitation in people with dementia. Methods: Papers describing neurobiological indices related to behavioral symptoms of dementia were reviewed. Papers comparing indices in persons exhibiting aggression and persons exhibiting agitation were selected for this review. Results: The survey found seven papers which compared neuroanatomical indices and three papers which compared neurochemical indices. The neuroanatomical indices differentiating agitation and aggression included changes in brain perfusion, sizes of brain areas, distribution of neurofibrillary tangles, and white matter changes. The neurochemical indices differentiating agitation and aggression included relationships with neurotransmitter variables and the cell count in the locus coeruleus. Conclusion: Despite the small number of papers and some methodological problems, the presented information clearly indicates that aggression and agitation are two distinct unrelated syndromes in persons with dementia

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

Neurobiological Differences Between Aggression and Agitation in Persons with DementiaAffiliation

Background: Controversy exists about definition of agitation and especially about inclusion of aggression as a part of agitation in people with dementia. Methods: Papers describing neurobiological indices related to behavioral symptoms of dementia were reviewed. Papers comparing indices in persons exhibiting aggression and persons exhibiting agitation were selected for this review. Results: The survey found seven papers which compared neuroanatomical indices and three papers which compared neurochemical indices. The neuroanatomical indices differentiating agitation and aggression included changes in brain perfusion, sizes of brain areas, distribution of neurofibrillary tangles, and white matter changes. The neurochemical indices differentiating agitation and aggression included relationships with neurotransmitter variables and the cell count in the locus coeruleus. Conclusion: Despite the small number of papers and some methodological problems, the presented information clearly indicates that aggression and agitation are two distinct unrelated syndromes in persons with dementia

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

Loneliness and isolation in long-term care and the COVID-19 pandemic

Social isolation (the objective state of having few social relationships or infrequent social contact with others) and loneliness (a subjective feeling of being isolated) are serious yet underappreciated public health risks that affect a significant portion of the adult population. Social isolation is a risk factor for development of loneliness, but some persons enjoy it (eg, hermits). Conversely, having social relationships does not ensure that loneliness will not develop, because the social relationship has to be meaningful. Many people feel lonely under the best of circumstances. Approximately one-quarter (24%) of community-dwelling Americans aged 65 and older are considered to be socially isolated, and a significant proportion of adults in the United States report feeling lonely (35% of adults aged 45 and older and 43% of adults aged 60 and older)