Why is dementia different? Medical students' views about deceiving people with dementia

Objectives: Care of patients with dementia raises challenging ethical issues, including the use of deception in clinical practice. This study aimed to determine the extent to which medical students agree that ethical arguments for and against deceiving patients in general apply to patients with dementia.

Method: Qualitative study using six focus groups (n = 21) and 10 interviews (n = 10) with undergraduate students in years 1, 3 and 5 at a UK medical school. Analysis using initial coding followed by comparison of data with a pre-existing framework concerning deception in clinical practice.

Results: Arguments for and against deceiving patients with dementia overlapped with those previously described in relation to clinical practice in general. However, the majority of participants highlighted issues unique to dementia care that warranted additional consideration. Three key dementia-specific considerations identified were capacity (understanding, retaining and emotional processing), perceived vulnerability and family dynamics. Students expressed uncertainty as to their ability to make judgements about honest communication with patients with dementia and their families.

Conclusion: Dementia adds additional complexity to clinical judgements about the acceptability of deception in practice. Medical students have a number of unmet learning needs with regard to communicating with patients with dementia and their families. Existing ethical frameworks may provide a helpful starting point for education about dementia care.     

Do people with dementia find lies and deception in dementia care acceptable?

Objectives: Research suggests that the use of lies and deception are prevalent in dementia care settings. This issue has been explored from the view point of carers and professionals, and the acceptability and ethicality of deception in dementia care remains an area of heated debate. This article explored the issue of lies and deception in dementia care from the unique perspective of the people being lied to: People with Dementia.

Method: This study used a qualitative methodology, specifically, Grounded Theory (GT). The study used a two-phased design. Phase one involved a series of one-to-one interviews with People with Dementia. During phase two, the participants were re-interviewed in order to develop the emerging theory.

Results: Lies were considered to be acceptable if told in People with Dementia's best interest. This best interest decision was complex, and influenced by factors such as the person with dementia's awareness of the lie, and the carer's motivation for lying. A model depicting these factors is discussed.

Conclusion: This study enables the perspective of People with Dementia to be considered, therefore providing a more complete understanding of the use of deceptive practices in dementia care settings. This study suggests that the use of lies and deception in dementia care warrants further investigation.     

What matters for people with dementia in care homes?

Objective: To determine to what extent the care home environment met the requirements of residents with dementia in the context of the views of managers, family carers and staff, and a standard environmental assessment.

Methods: Sixty participants joined focus groups to give their views, and the managers of all five care homes were interviewed. An environmental assessment of each home was carried out using the Sheffield Care Environment Assessment Matrix (SCEAM).

Results: The most common themes identified from the residents and carers groups were the need for activities and outings, staffing levels, and staff training, attitudes and commitment. Managers felt comfort and homeliness were most important features whilst staff rated health and safety highest. Care homes scored well on the SCEAM for health and safety, and comfort, however key aspects such as activities and staff factors were not covered by the tool.

Conclusion: Care homes may be designed and organised according to the priorities of staff and managers rather than the needs of residents and family carers. Service planners need to be aware of this discrepancy and consider the views of residents.     

Domiciliary and day care services: Why do people with dementia refuse?

Objective: To explore the reasons given for refusal of day services, and to examine the relationship between willingness to accept day services and clinical variables.

Method: Fifty people with dementia who lived alone and had refused day services were interviewed.

Results: The most common reasons for reluctance to attend day services were the belief that they did not need day services, that they liked being on their own, and the belief that they would not enjoy it. People who persistently refused day services tended to have additional worries about meeting new people, losing their independence and being institutionalised. Fifty-four per cent of people with dementia who lived alone and had refused day services scored six or more on the Cornell Scale for Depression in Dementia, suggesting possible presence of major depression.

Conclusion: In patients with dementia who live alone and refuse day services, their misconceptions about day services and possibility of undiagnosed depression need further exploration.     

Factors influencing the person–carer relationship in people with anxiety and dementia

Objective: The relationship between people with dementia and their carers is complex and has a significant impact on the dementia experience. The aim of this current study was to determine (1) which factors are associated with the quality of the patient–carer relationship and (2) whether these differ between the two perspectives.

Method: Participants (people with dementia and their carers) were taken from a randomised controlled trial of cognitive behaviour therapy for anxiety in dementia. The quality of the relationship from both perspectives, anxiety and depression in both parties; and the quality of life, neuropsychiatric symptoms and cognitive functioning in people with dementia was examined at three time points (baseline, 15 weeks and 6 months).

Results: There were 127 observations from 50 dyads (100 individuals) across the three time points. Factors significantly related to quality of relationship from the person with dementia's perspective were their own aggression, agitation, irritability, depression, anxiety and quality of life. Factors significantly associated with quality of relationship from the carer's perspective were their own anxiety and depression, and the depression, irritability, behavioural disturbances and quality of life of the person with dementia. People with dementia generally rated the quality of relationship higher, irrespective of level of dementia, depression or anxiety.

Conclusion: This study is novel in that it provides a valuable insight into the impact of mental health on relationship quality for both members of the dyad. The findings emphasise the importance of providing interventions which target mood for both parties, and behavioural problems for people with dementia.     

What should be in a self-management programme for people with early dementia?

Objectives: First, to use participative research methods to obtain views from people with dementia and carers about their experiences and the interventions that they consider can assist in facilitating independence and quality of life post diagnosis. Second, to use these views to identify priority topics for a potential self-management programme. Third, to explore the relevance of the identified topics with a consultation group of people with dementia and their carers, thus informing the creation of a draft self-management programme.

Method: A series of individual and dyad interviews were conducted with people with dementia and family carers to explore their experiences post diagnosis and obtain views of how quality life can be maintained while living with dementia. A further group of people with dementia and carers then met over six successive weeks to explore and provide feedback on the topic areas generated out of the initial interviews and add to the content.

Results: Data generated from the individual interviews identified a number of themes for a potential self-management group which were then validated through consultation. Optimum modes of delivery of a self-management programme were also indicated.

Conclusions: A draft programme has been constructed building upon the framework of identified priorities. The process and outputs from the consultation also indicated the significant ramifications of such a programme for services.     

Detecting agitation and aggression in people with dementia using sensors—A systematic review

Agitation and aggression are among the most challenging symptoms of dementia. Agitated persons with dementia can harm themselves, their caregivers, or other patients in a care facility. Automatic detection of agitation would be useful to alert caregivers so that appropriate interventions can be performed. The building blocks in the automatic detection of agitation and aggression are appropriate sensing platforms and generalized predictive models. In this article, we perform a systematic review of studies that use different types of sensors to detect agitation and aggression in persons with dementia. We conclude that actigraphy shows some evidence of correlation with incidences of agitation and aggression; however, multimodal sensing has not been fully evaluated for this purpose. Based on this systematic review, we provide guidelines and recommendations for future research directions in this field.     

Does striatal pathology distinguish Parkinson disease with dementia and dementia with Lewy bodies?

The morphological differentiation of Parkinson disease with dementia (PDD) and dementia with Lewy bodies (DLB) is a matter of discussion. The objective of this study was to investigate the regional distribution of beta-amyloid (Abeta) plaques, alpha-synuclein (AS), and pathology in both disorders. The basal ganglia from 17 age-matched patients of PDD and DLB each were immunohistochemically examined with variable degrees of associated Alzheimer pathology using antibodies to Abeta, AS, and tau. DLB brains showed a significantly higher burden of (diffuse) amyloid plaques in the putamen and caudate nucleus and slightly more severe tau pathology than PDD brains despite similar neuritic Braak stages. Phases of Abeta development in DLB brains often, but inconsistently, correlated with both neuritic Braak stages and severity of striatal Abeta load, while these correlations were almost never seen in PDD cases with Alzheimer lesions. They also revealed a higher burden of AS-lesions (both Lewy neurites and Lewy bodies) than PDD cases that commonly had a paucity of all three types of lesion. The globus pallidus was virtually spared in both phenotypes. Differences in AS and Abeta pathologies and much less of tau lesions in the striatum support a morphologic distinction between PDD and DLB, which may be of pathophysiologic importance, but the causes of these differences are unclear.     

Are Parkinson's disease with dementia and dementia with Lewy bodies the same entity?

The diagnosis of Parkinson's disease with dementia (PDD) or dementia with Lewy bodies (DLB) is based on an arbitary distinction between the time of onset of motor and cognitive symptoms. These syndromes share many neurobiological similarities, but there are also differences. Deposition of beta-amyloid protein is more marked and more closely related to cognitive impairment in DLB than PDD, possibly contributing to dementia at onset. The relatively more severe executive impairment in DLB than PDD may relate to the loss of frontohippocampal projections in DLB. Visual hallucinations and delusions associate with more abundant Lewy body pathology in temporal cortex in DLB. The differential involvement of pathology in the striatum may account for the differences in parkinsonism. Longitudinal studies with neuropathological and neurochemical evaluations will be essential to enable more robust comparisons and determine pathological substrates contributing to the differences in cognitive, motor, and psychiatric symptoms.     

Living with dementia from the perspective of older people: Is it a positive story?

Dementia, even at an early stage, may pose problems and challenge one's quality of life. Having accurate knowledge of what one experiences when living with dementia is important for developing proactive care for individuals with dementia and their families. The aim of our Grounded Theory study was to explore what it means for elderly people to live with early-stage dementia. We interviewed 20 elderly people with probable mild dementia and their family members. Living with dementia was often presented as a positive narrative, one that told of only minor problems and which stressed abilities and contentment with life. Being valued, rather than losing one's cognition or identity was central in their experience. More in-depth analyses of participants' narratives revealed, however, that they were constantly balancing their feelings of value and worthlessness, struggling to remain someone of value. This struggle was prompted by threats posed by dementia and by the persons' interactions with others. Superficially, a positive narrative may be understood as a lack of awareness or as denial due to cognitive loss. Our findings suggest, however, that we should look beyond this superficial view and seek to understand the narrative as an expression of one's attempt to counterbalance devaluation.