Dementia

The Mental Capacity Act (MCA) was fully implemented in England and Wales in October 2007 and has relevance for the care home sector through its focus on decision-specific assessments of capacity. This article reports on research that forms part of a five year programme exploring evidence-based interventions in dementia and this article draws on part of the research that was designed to identify issues relating to implementation of the Act. Specific research questions for this study pertain to staff abilities to incorporate a new legal framework addressing mental capacity into care of people with dementia. Qualitative interviews with 32 staff in one group of care homes in Southern England demonstrated that, regardless of knowledge of MCA, the daily working ethos of staff appeared to be within the remit of Act. Training could therefore continue to build on these principles. However, considerable variation in understanding of terms and principles of the MCA was found. Few participants were aware of specific legislative points and offered ‘common sense’ explanations for their actions and decision-making. This level of knowledge may not meet regulators’ requirements or the needs of residents.

Agitation is a widespread and challenging problem among aged care residents with dementia. This article draws on empirical and theoretical literature to propose a model for preventing and treating agitation non-pharmacologically. A literature review finds agreed, coherent definition and measurement of agitation to be absent despite numerous agitation remedies having been suggested, yet sufficient material to support evidence-based care planning. Agitation is revealed as resulting from a resident’s interactions with the environment or their internal state, giving rise to unmet needs that attentive care can treat. Agitation treatments are reviewed to find no single effective remedy and a lack of quality evaluation. A higher-order, problem-solving approach is proposed. The described system consists of sequential diagnosis, decision making and treatment options, commencing with individualized and institutional preventative measures removing environmental triggers, followed by individual remediation, with residents’ unmet needs receiving priority consistent with patient-centred care.

This study reports on the experiences of 25 family carers of the hospital discharge planning process for their family member with a dementia. Analysis of the data indicates that the needs of family carers were not always addressed in the hospital discharge process and that discharge planning and execution is in need of improvement.

The focus of this paper is the experiences and needs of family carers of people with end-stage dementia. The project involved in-depth, qualitative interviews with 15 carers. The major themes emerging from the accounts of participants’ experiences were: getting support; having to trust others with care; managing the loneliness of being a carer; witnessing a loved one fade away; anticipating and experiencing death; and re-establishing life after the funeral. Carers expressed a range of instrumental and psychosocial needs. The study has provided a more personal account of the caring experience than much of the related literature. It has emphasized the need of carers for genuine understanding and connection — from family and friends as well as healthcare staff. The study highlights the amount of support carers can provide to each other through support groups and associated friendships, and stresses the importance of healthcare staff acknowledging and respecting this capacity of carers.

Communication involving persons with cognitive impairment (CI) associated memory issues requires particular attention in the clinical setting due to the sensitive and often difficult institutional work that must take place between the patient and his or her physician. An individual with CI is often tested for memory issues during the office visit, generating a potentially face-threatening situation. Said individual may attempt to preserve positive identity or ‘save face’ (Gumperz, 1982) by using communicative coping behaviors (CCBs). This study characterizes the use of CCBs (e.g., accounts and humor) by persons with CI in clinical interviews and provides important insight on how to improve doctor—patient communication involving people with CI. In order to describe and compare CCBs used by persons with cognitive impairment, and those used by cognitively normal individuals, verbatim, in-office transcripts from both groups were analyzed. Results showed that participants with CI used more memory accounts than cognitively normal individuals and similar amounts of humor in order to save face and construct a normal identity. These data help to inform doctors and caregivers regarding the ways in which persons with CI construct and preserve a positive sense of self-identity through communication.

We conducted face-to-face, semi-structured interviews with six white men with early-onset dementia (EOD) and supplemented the interviews with a focus group with six wives of the men to document perceptions of a weekly, supervised volunteer program for the men at the local zoo. The program, ‘Get Out of the House,’ is designed to provide individuals with EOD a weekly opportunity to participate in meaningful, supervised volunteer work in the community. Interviews with participants revealed that they strongly identify with the program and are eager to share their experiences, about which they show some depth of insight. The focus group revealed that the program represents a break in the day-to-day routine for spouses and families, as well as participants, and has benefits that extend beyond the program time itself. Challenges with the development and implementation of such programs and implications for research and practice are discussed.

Research suggests that the onset and progression of dementia may pose a threat to a person’s sense of identity. This qualitative study used Interpretative Phenomenological Analysis to explore participants’ perceptions of the impact of dementia on their identity. Participants were ten people with dementia. The four themes emerging from the data represented participants’ views on aspects of their current identities, whether they believed that dementia would alter their identities in the future, perceptions of how dementia had affected their lifestyle, and relationships with friends and family. The analysis suggested that for the most part, participants felt that little had changed with respect to their identities as a whole, but most identified features of themselves that were different than they had been prior to the onset of dementia. Thus it appeared that participants were in a state of flux, experiencing both continuity and change in their sense of identity simultaneously.

Although it is widely accepted that spirituality is an important aspect of health and healing in long term care, its meaning and day-to-day implications remain poorly understood. This study explored the meaning of spiritual care from the perspectives of patients living with moderate to severe dementia, their families and their care providers. Using a hermeneutic phenomenological approach, open-ended interviews were conducted in a dementia care unit with 29 participants, including patients, families, RNs, LPNs, and hospital chaplains. Interviewees were asked to share their stories and insights about spiritual care in dementia. Using hermeneutic analysis, the central theme of ‘little things’ was identified. Recognition and attendance to ‘little things’ promoted patients’ sense of personhood and connectedness to self and others. Barriers to spiritual care in dementia were also identified. These findings inform our understanding about effective relational approaches in spiritual care with this unique population.

StoryCorps’ Memory Loss Initiative was designed to gather oral histories of people with memory loss. This study investigated the StoryCorps interview experience for storytellers who self identify with early stage memory loss and the persons who interviewed them. StoryCorps interviews took place in Milwaukee, Chicago, and New York. Follow-up interviews were conducted with 42 persons with memory loss, along with 27 family members who participated in the StoryCorps interviews. Results revealed that the StoryCorps experience was a meaningful activity that allowed participants to acknowledge the beauty of the present moment, to reflect and engage in meaningful conversations, to re-affirm both the selfhood of individuals with memory loss and their relationships with family members, and to and be a part of national history while leaving a legacy for future generations within families. The findings are discussed within the context of personhood enhancing strategies for persons with memory loss.

A psycho-educational intervention focused on communication was conceived for caregivers of family members in the early stage of Alzheimer’s disease (i.e., persons with dementia), and tested on five proximal outcome variables: caregiver knowledge, perceptions of communication difficulties and degree of perceived disturbance related to these difficulties, self-efficacy and skills. Guided by a theoretical framework that encompassed geragogy, the McGill model of nursing and self-efficacy theory, the intervention was evaluated via an experimental design with pre-post tests. Fifty family caregivers were randomly assigned to an experimental group (intervention program), or to a control group (information flier on communication and memory). Statistically significant effects were found on four dependent variables: caregiver knowledge, degree of disturbance related to communication difficulties, self-efficacy and skills. No significant effects were observed in regard to the perceived presence of communication difficulties. This communication program serves as a useful tool to prepare caregivers for their new role.