Dementia

In the 1940s, Carl Rogers introduced the notion of a client-centred or person-centred approach, originally called the ‘non-directive approach’. Over the past several decades, however, we have lost sight of the true intent behind Roger's relational approach, settling instead on well-intended but often paternalistic approaches that place patients or clients at the centre of care, but rarely, if ever, actively involve them in decision-making. This is no more apparent than in the case of persons living with Alzheimer's disease and other related dementias who, due to the stigma and misunderstanding surrounding dementia, are often assumed to lack the capacity to be involved in their own care and the care of others. Drawing on our experience working directly with persons with dementia, family members and professionals, and systematic research on a number of mutual partnership initiatives, the purpose of this paper is to present an alternative approach, one that views persons with dementia as equal partners in the context of dementia care, support and formal services.

Purpose of the study: Caring for a spouse diagnosed with Alzheimer’s disease holds potentially severe negative consequences for the physical and psychological well-being of the caregiver. As it is known that the maintenance of a flexible time perspective holds benefits for individual health, the main purpose of this study was to identify and describe the changes in the time perspective of persons caring for a spouse diagnosed with Alzheimer’s disease.

Design and Methods: The SELE instrument was administered in order to shed light on the time perspective of a total of 40 participants. A criterion group design was used, and a mixed methods approach adopted during the collection and analysis of data.

Results: The results of this research project highlighted the existence of a number of important differences regarding the time perspective of caregivers and non-caregivers. The time perspective of caregivers was severely affected by the caregiving situation and the accompanying grieving process. This proved to be one potential avenue through which the caregiving situation has its negative effect on caregivers’ well-being.

Implications: Owing to the usually insufficient funding for the care of demented patients, research regarding the identification of potential cost-effective methods to enhance the resilience of caregivers is of the essence. Maintenance of a balanced time perspective might prove to be to the benefit of caregiver psychological well-being.

Objective: to study possible interrelations between decubitus ulcers and Aminoff suffering syndrome in end-stage dementia (ESD).

Subjects: a cohort study of 200 ESD patients with a six-month follow-up period.

Methods: interrelations between decubitus ulcers and Mini-Suffering State Examination scores on admission were studied.

Results: on the day of admission to the Geriatric Department, 40% of ESD patients, of whom 63.8% (51/80) were male, suffered from decubitus ulcers (80/200). Patients with decubitus ulcers had a higher Mini-Suffering State Examination score (5.49 + 2.17) than those without bedsores (3.48 ± 2.22), with a significant difference (P < 0.0001). During a six-month follow-up period, 71.2% (57/80) of end-stage patients with decubitus ulcers were diagnosed as having Aminoff suffering syndrome and subsequently died, versus 45.8% (55/120) ESD patients who had not bedsores (P < 0.0001).

Conclusions: Decubitus ulcers contribute to the development of Aminoff suffering syndrome in ESD.

Much research has investigated the impact of dementia on spousal relationships. Most often this is from the point of view of the spouse, but occasionally people with dementia are interviewed independently or in parallel. The current study was novel in its aim to understand ‘couplehood’ as it is co-constructed by the couple when one partner has dementia and employed an innovative design that involved interviewing couples together about their relationship. Using grounded theory methodology, the study identified the changing identities within couplehood and the strategies couples employ to maintain their relationship, including normalizing, externalizing, sharing the experience and reframing the experience in light of the past. These findings are discussed in relation to other relevant research and suggest that co-constructed accounts of couplehood are valuable not only when researching the experiences of couples with dementia but also in their clinical assessment and treatment.

Day care at green care farms (GCFs) is a new care modality for community-dwelling older people with dementia. In view of the more physical and normal daily life activities available at GCFs than at RDCFs, we investigated whether functional decline differed between subjects from both day care settings. In this observational cohort study, primary caregivers of 47 subjects from GCFs and 41 subjects from RDCFs rated the subjects’ functional performance three times during one year. They also provided information on the subjects’ diseases and medication use. Generally, no significant change over time in functional performance, the number of diseases and the number of medications was observed, and no differences in these rates of change were found between subjects from both day care settings. This study suggests that GCFs are not more effective in maintaining functional performance or slowing down its decline in community-dwelling older people with dementia than RDCFs.

This study examined change in patient and caregiver ratings of patient quality of life (QOL) over one year in individuals with dementia living in rural and remote settings. The sample was selected from non-institutionalized patients who were assessed at an interprofessional memory clinic. Measures of QOL, cognitive function, depression, and functional ability were completed by the patient. Caregivers completed measures of patient QOL and behavior, and their own burden and distress. At baseline (clinic day) 119 patients and family caregivers were assessed. Thirty-two families had complete data at clinic day and one-year follow-up. There was no significant change in either patient or caregiver-rated QOL over one year. Significant predictors of patient self-rated QOL were patient symptoms of depressed mood and functional ability at clinic day, and symptoms of depressed mood and clinic day QOL at one year. Significant predictors of caregiver-rated patient QOL were caregiver burden, patient functional ability, and symptom severity at clinic day, and caregiver burden at one year. Patient and caregiver ratings of patient QOL were moderately associated, but neither patients nor their caregivers reported a significant change in patient QOL. Changes in QOL over time remain a unique individual experience that cannot be entirely predicted by analytical models.

This article describes the development of a bicultural approach to dementia care in Tai Tokerau (Northland), Aotearoa New Zealand. It emphasises the need to provide care for Māori people with dementia within the context of extended family structures in order to improve their representation in dementia services.

Technologies have the capacity to be enabling or disabling for people who are living with dementia. Accessible information is required to equip people to make informed decisions about what technologies are available and how they may be utilised to support independence. This article describes the development of a web-based resource called ATdementia which was designed to provide independent information on assistive technologies for people who are living with dementia. It was designed to be accessed by people with dementia, families, supporters and professionals. The article describes the development and the early operation of ATdementia. Mention is also made of the ATguide, a self assessment tool to support decision-making in relation to technologies. ATguide was launched in 2012.

This qualitative study examined the beliefs of five healthcare professionals about caring for patients dying from cancer with a coincidental dementia. Using a methodology based on Heidegger’s phenomenology the phenomenon under scrutiny was opened out to discover the essence of what it really means for these healthcare professionals to be working with this group of patients.