Care home design for people with dementia: What do people with dementia and their family carers value?

Objectives: To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers.

Method: Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male).

Results: Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to ‘bricks and mortar versus people’. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision.

Conclusion: The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.     

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.     

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.     

Individualized formulation-led interventions for analyzing and managing challenging behavior of people with dementia – an integrative review

Objective: Individualized formulation-led interventions offer a promising approach for analyzing and managing challenging behaviors in people with dementia. Little is known about which individualized formulation-led interventions exist and what effects these interventions have on people with dementia and their caregivers. Therefore, the review aims to describe and examine existing interventions and to review their evidence.

Methods: An integrative review of individualized formulation-led interventions for managing challenging behavior in people with dementia was conducted. PUBMED, PsycINFO [EBSCO] and CINAHL [EBSCO] databases were searched between February and April 2014 using key terms related to dementia, challenging behavior and individualized formulation- led interventions. The literature search was limited to German and English publications published from 1995. No limitations were placed on the type of paper, type of study design and stage of disease or setting. 37 relevant papers that met the inclusion criteria were included in this review.

Results: The literature review provided 14 different individualized formulation-led interventions. The effects on people with dementia were diverse, as only half of the studies showed a significant reduction in behaviors compared with the control group. Family caregivers felt less upset about the challenging behavior and more confident in their ability to manage the behavior.

Conclusion: There is a clear need for further research on individualized formulation-led interventions. The results of this review have the potential for developing interventions and for designing methodological robust evaluation studies that take into account the effectiveness of individualized formulation-led interventions on patient and caregiver outcomes.     

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.     

Can reality orientation be rehabilitated? Development and piloting of an evidence-based programme of cognition-based therapies for people with dementia

This study describes the development and implementation of a programme of cognition-based therapies for dementia. The programme was designed by distilling the evidence of the effectiveness of Reality Orientation and related approaches, following a broad-based systematic review. The most beneficial elements identified from previous studies were extracted and incorporated into the programme, using the expertise of specialists in the field. The programme comprised of 15 45-min, twice weekly sessions. It ran in one day centre and three residential homes, involving 27 people with dementia (17 treatment and 10 control subjects). The results of the pilot study showed positive trends in cognition, and trends towards reduced depression and anxiety following treatment. No negative effects were identified. We discuss how the outcomes of the pilot study were used to modify the programme, which now has a stronger cognitive element. This refined programme is currently being tested as part of a large multicentre, randomised controlled trial.