Dementia

Consent theoretically threads through the whole qualitative research method, so getting this right can set the tone for person-centred relationships between researcher and participants. However, most attention has been given in the UK to cognitively biased informed consent and to consent taking place at the beginning of projects; and in North America to assent or the lack of objection. The method in this article is based on the premise that for persons with a dementia, informed consent becomes increasingly redundant and consequently exclusionary to them as persons. This article sets out and describes a method for consent that focuses on persons with dementia, traditionally excluded from consent and thus from research, and also refocuses on consent as a process that runs through the whole of a research project. It also suggests that use of this model can strengthen the assent process. Examples from two contrasting doctoral studies will be offered to illustrate the method in action. The first study investigates wandering in older persons with dementia living in a nursing home. The second study is a randomized control trial investigating an intervention for heel sores in older persons with dementia as patients on orthopaedic wards in a general hospital.

Day care, as a type of care in between residential care and home help, has been available for several years, and is often referred to as an adequate alternative form of care for people with dementia. The goals of Swedish day care are to create a meaningful day for participants, offer family caregivers respite, and provide care for persons with dementia. The aim of this Swedish study was to describe day care clients with dementia problems over a 12-month period, and to discuss what distinguished those who discontinued day care from those who stayed with it. Of the clients, 76 percent were diagnosed by a doctor as having dementia between level one and four out of a total of six levels, according to the Berger rating scale of severity of senility. The results showed that one third of the people with dementia discontinued within four months. Another third dropped out within 12 months. People with behavioral problems and those who needed assistance with dressing and toileting discontinued earliest. All caregivers found some benefit of day care for their relatives and for themselves, with the exception of some caregivers of those who ended within four months. Most of the clients who lived alone at the start of day care, and ended within 12 months, went to a nursing home. Two differing conclusions may be drawn from the findings: (1) that offering day care services to persons with dementia who also show signs of behavioral problems is questionable; or (2) that the planning of day care in Sweden should be adjusted to also meet the needs of persons with behavioral problems, such as depression. In its current form, day care in Sweden seems only partially to fulfil its goals.

Persons with Alzheimer’s disease (AD) often seem to have a poor insight into the functional deficits brought about by the dementing process. There are many indications that preserved insight into deficits in dementia is of advantage to a person with AD. Various research approaches have been adopted to investigate poor insight related to AD. The purpose of this article was to present various research approaches for investigating poor insight into deficits in AD. The study is based on a literature survey. The findings show that concept of poor insight has been investigated in detail from different perspectives. Each one of the perspectives found, the neuropsychological, the psychological and the socio-psychological, has its merits, but none of them has yet led to study results that make us fully understand what poor insight implies and involves. We need integrated knowledge from the different perspectives, and in multidisciplinary research settings we believe that such knowledge could be developed.

An increasing number of studies have begun to explore the subjective experience of individuals with dementia. However, despite the increased prevalence of dementia in individuals with Down syndrome, no such published research has been undertaken within this population. The aim of this study was to explore the perspectives and subjective experiences of six individuals with Down syndrome and dementia. Semi-structured interview accounts were analysed using Interpretative Phenomenological Analysis, in order to gain a level of understanding concerning the impact of dementia upon respondents’ lives and sense of self. Five main themes emerged: (1) Self-image, (2) The Relational Self, (3) Making Sense of Decline,(4) Coping Strategies and (5) Emotional Experience. Whilst the process of adjusting to dementia appeared comparable to the general population, the content of this was influenced by multiple levels of context specific to having a concomitant intellectual disability.

Although family involvement is considered an important aspect of care for residents with dementia in long-term care facilities, measurement is lacking. The purpose of this study is to present a multi-item reliable measurement instrument assessing family perceived involvement. Literature reviews, observations within facilities, iterative consultations with an expert panel and extensive pilot testing of items for family perceived involvement were undertaken, to establish face and content validity. Two scales were developed: family perceived involvement and family assessment of importance of their involvement in individualized care for their resident relative. Strong evidence of face and content validity, internal consistency and test-retest reliability were established for both scales. Short versions of the original scales were derived via factor analysis. These instruments provide researchers and facilities with the ability to measure both degree of family perceived involvement and the importance the family places on that involvement using a relatively brief set of statements.

This descriptive study examined the health care decision-making (HCDM) process of 20 community-dwelling care receivers (CR) with mild to moderate dementia and their family caregivers (CG). We conducted semi-structured interviews with the CR, focusing on their HCDM experiences. Additional data were obtained from the quantitative portion of the larger study. Major factors in the HCDM of the CRs were: symptoms, resources, function, trust in the health care system, and reliance on family. Poor congruence between CR and CG choices on treatment was analyzed in light of the qualitative findings. We found that older adults with mild to moderate dementia can participate in the HCDM process, make choices, and provide reasonable explanations for their choices. We concluded that disagreement on treatment choices in family dyads may be more fully explained by using a human needs-based model, as opposed to attributing care receivers’ choices to cognitive status alone.

Dementia has been understood primarily as a biomedical phenomenon with a trajectory of irrevocable decline related to neurodegenerative changes. However, growing evidence suggests that the performance and behaviour of persons with dementia are not exclusively determined by neuropathology but are also influenced by personal histories, social interactions and social contexts. This evidence shifts attention from the disease process to the need for a more in-depth understanding of the place of personhood in dementia care. Despite its intuitive appeal however, there is limited empirical research grounding this approach to care. This article articulates a framework for organizing research in this area that is based on a critical review and synthesis of research. It encompasses three interrelated and intersecting domains of inquiry: the subjective experience of the person with dementia, the immediate interactional environment and the broader socio-cultural context. Each domain encapsulates a unique but interrelated dimension of a person-centred approach to dementia care.