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.     

Abuse of vulnerable people with dementia by their carers: can we identify those most at risk?

OBJECTIVE: We wanted to explore possible associations between characteristics of carers, dementia sufferers and the caring situation and the presence of abuse that was acknowledged by carers. METHODS: Eighty-two carers of dementia sufferers were interviewed in their homes about three types of abuse (verbal abuse, physical abuse and neglect) using a structured questionnaire. RESULTS: Fifty-two percent (n = 43) carers admitted to having carried out some form of abuse. Verbal abuse was the most common form (n = 42, 51%), while 20% (n = 16) of carers admitted to physical abuse and 4% (n = 3) to neglect abuse. Significant associations were found between verbal abuse and psychological ill health in the carer and behavioural problems in the dementia sufferer. Physical abuse was significantly associated with higher levels of self-reported good health by the carer. High expressed emotion measured in carers was highly correlated with all types of abuse. CONCLUSION: It is possible to identify situations where people with dementia may be at high risk of abuse from their carers. Any effective intervention strategy should address psychological health problems in the carer, behavioural problems in the dementia sufferer and a strategy to manage high levels of expressed emotion in these situations.     

Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia

Objectives: Including the perspectives of persons with dementia (PwD) is essential in order to organize care structures for them. With this systematic review, we set out to screen the existing scientific evidence on self-expressions of community-dwelling individuals with dementia in order to provide a research base for developing an intervention for persons in early stages of the disease. The leading research questions for this review are: What needs do PwD living at home express? What are their subjective demands? What do they do to cope with their situation?

Methods: We performed a systematic literature review of review publications on subjective experiences of PwD. The publications were analysed using MAXQDA 10 to perform a thematic analysis.

Results: We identified 41 relevant reviews, of which 6 met our inclusion criteria. PwD experience the whole range of human emotions. Their needs and demands do not differ significantly from those of other groups of patients with chronic conditions. Coming to terms with the disease and maintaining normality appeared to be major themes. With regard to expectations from the side of professional health care, the need for accompanying, continuous support and counselling appeared to be central. Furthermore, disclosure of diagnosis represents a critical stage for PwD, but our findings indicated that they prefer to be included in this process.

Conclusions: PwD are well able to express their needs. They should be included in research since they can provide valuable findings. Furthermore, those findings should be implemented in applied dementia care.     

Support for family carers of children and young people with developmental disabilities and challenging behaviour: what stops it being helpful?

Background   Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful.
Methods   Thirteen mothers, caring for a child with intellectual disability and challenging behaviour, were interviewed. Parental perceptions and concerns regarding support received were investigated. Transcribed interviews were analysed using interpretive phenomenological analysis.
Results   Parents reported problems with generic disability services including accessing good services, obtaining relevant information, working relationships with professionals and issues with respite provision. Concerns were also expressed about challenging behaviour-specific provision including ineffective strategies being suggested, an apparent lack of expertise, insufficient input and their child's exclusion from services.
Conclusions   More preventative approaches, more widespread adoption of effective behaviour management and improved partnership between professionals and families appear needed. Increasing family support may be ineffective if not accompanied by greater insight into the factors related to effectiveness and recognition of the role of informal support.     

Breaking the bad news: What do psychiatrists tell patients with dementia about their illness?

Consultants in old age psychiatry were sent a questionnaire concerning their practice in informing dementia patients and their carers about the diagnosis and prognosis. The results showed a wide variation in practice. Carers almost invariably were told of the diagnosis. Patients with severe dementia were almost never told. There was more of a tendency to tell moderately affected sufferers but for patients with mild dementia practice was variable. There was a significant difference between all categories of dementia and the carer category for both diagnosis and prognosis giving. Informing patients of diagnosis differed from informing of prognosis only in the mild dementia category, with the tendency to give diagnosis more frequently than prognosis. Carers were also given diagnosis more frequently than prognosis. The article discusses some of the issues involved in giving information on diagnosis and prognosis to patients 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.     

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 information do patients with schizophrenia have about their illness and treatment?

Improved compliance with antipsychotic medication is a major issue in schizophrenic management. For this purpose educational programs have been used, but up to now, little or no information has been gathered or published in France concerning schizophrenic patients' opinion on information they have about their disease and their treatment. Thus we conducted a survey in concert with 78 psychiatrists from the French psychiatric health service. From this cross sectional survey we assessed 336 outpatients (male: 72%; mean age: 36 +/- 10.4 years) with schizophrenia according to the DSM IV (paranoid sub type: 57%, disorganized: 12%, catatonic: 1%, undifferentiated: 12%, residual: 18%). The mean duration of the illness was 11.6 years (sd: 8.5) and the mean duration of the follow up with the same psychiatrist was 5.4 years (sd: 5.1). Patients completed a questionnaire which assessed their level of information on mental illness and treatment. The diagnosis of schizophrenia has been told to their patients by 39% of the psychiatrists, and treatment has been explained to the patients by 96% of the practitioners. Results indicate less than half of the patients (45%) felt ill, only 46% thought they knew their illness well or very well (nevertheless only 31% of them named spontaneously the diagnosis of schizophrenia or psychosis), and 61% considered that they had been given sufficient information. Most of the patients (79%) were persuaded that their treatment was useful, and 75% of patient were completely satisfied with their treatment. Surprisingly 92% reported taking their medication regularly. Most patients think that a high level of information about their illness (74%) and treatment (79%) help them to cope better with their schizophrenia. Analysis performed according to patients characteristics indicated that paranoid patients felt more ill (p = 0.035) than others, thought to know less about their illness (p = 0.0065), and were less satisfied with their treatment (p = 0.04) and their level of information (p = 0.03). Patients with a duration of their illness longer than 10 years were more convinced of the utility of their treatment (p = 0.02) and had debated more on the choice of their treatment with their psychiatrist (p = 0.047). Patients older than 35 years were more satisfied with their information (p = 0.002). More patients with atypical antipsychotics accepted to take their treatment on a regular basis (p = 0.035) compared to patients under classical neuroleptics. This survey underlines that mental health consumers' opinions can be obtained even in the field of schizophrenia, and argues in favour of further such investigations. It also highlights the need for educational programs on schizophrenia and antipsychotic medications.     

An Art Gallery Access Programme for people with dementia: ‘You do it for the moment’

Objectives: People with dementia often have decreased opportunities to engage in higher level intellectual or sensory activities. This programme investigated the effect of taking people with dementia to discuss artworks at the National Gallery of Australia (NGA).

Method: Fifteen people from the community and eight from residential care attended the gallery once a week for 6 weeks. They discussed artworks with NGA Educators trained in dementia skills. Sessions were filmed and the level of engagement analysed using time sampling methods. Focus groups with participants, carers, and educators provided qualitative data.

Results: Participants were engaged from the outset and remained engaged. They became animated, gained confidence and were able to discuss and interact with the artworks and the social process. This included the more impaired RACF groups, who were more withdrawn or behaviourally disturbed in their usual environment, raising the concept of excess disability. In focus groups these participants had impoverished memory for the programme but community participants remembered it with pleasure and wanted it to continue. Carers confirmed these sentiments but reported no lasting change in participants. Educators spoke mostly about what they had learned, including new ways to present to other clients.

Conclusion: The programme went beyond many dementia activities. Despite no evidence for lasting effects, all involved wanted the programme to continue. A carer quote: You do it for the moment encapsulates a sense that an activity is worthwhile even if it gives benefit only whilst running. The programme is continuing and expanding.