What motivates people to care for someone with dementia?

This review looks to identify and describe informal carers’ motivations for caring for people living with dementia, including their motivations at the start of caring and motivations for continuing to care.  The authors also, where possible, aimed to qualitatively identify and describe any similarities or differences in motivations amongst different demographic groups e.g. in terms of gender and relationships (e.g. spouse versus adult child) and ethnic or cultural groups | BMC Geriatrics

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Background
Informal, often family carers play a vital role in supporting people living with dementia in the community. With ageing populations, the part played by these carers is increasing making it important that we understand what motivates them to take on the role. This systematic review aimed to identify and synthesise qualitative literature describing what motivates people to care for someone with dementia.

Methods
The review followed the Centre for Reviews and Dissemination (CRD) guidelines. Six electronic databases were searched from their first records until August 2018. Synthesis was narrative.

Results
Twenty-six studies fitting the inclusion criteria were identified. Carers described multiple, inter-related motives for caring for someone with dementia. Caring was generally described as a reflection of long-standing family relationships between carers and the care recipients, whether by blood or marriage. Commonly offered motivations included love, reciprocity, filial piety, duty and obligation.

Conclusions
Perhaps the most striking finding was the similarity in these motivations irrespective of gender or relationship with the care recipient. Family relationship and shared history underlay most motivations. Future research should include more longitudinal studies incorporating within study comparisons between different demographic groups to give greater confidence in identifying similarities and differences between demographic groups.

Full article: Nan Greenwood and Raymond Smith | Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature | BMC Geriatrics | 2019 | 19:169 | published 17 June 2019

Goal-setting can help people with early-stage dementia improve function

Large trial shows that cognitive rehabilitation helped people mildly affected by dementia to improve their goal setting and attainment. Disappointingly, this wasn’t accompanied by improvements in self-efficacy, depression and anxiety, cognitive functioning, quality of life or carer stress | Health Technology Assessment | via NIHR

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Goal-setting as part of cognitive rehabilitation delivered by occupational therapists helped people with early dementia progress towards independence in daily tasks, with benefits lasting for nine months. This approach focuses on the everyday tasks needing concentration and memory and prioritising those that matter most to individuals, from using the cooker or answering the phone. The intervention was well-received, but the cost-effectiveness is not clear, because quality of life continued to deteriorate.

Therapists delivered ten sessions of cognitive rehabilitation over three months, with another four sessions over the next six months. Rehabilitation was intended to identify goals important to the person with dementia and their carer (including basic self-care and participation in events). The therapist identified barriers to achievement and worked on helping people to overcome them.

Compared to people with early dementia treated with usual care, those given cognitive rehabilitation were more likely to show progress towards their goals after three months. However, secondary outcomes such as quality of life did not show improvement for patients or carers, meaning that the intervention was not cost-effective by usual measures.

Full details at National Institute for Health Research

Clare L, Kudlicka A, Oyebode J R et al.| Goal-oriented cognitive rehabilitation for early-stage Alzheimer’s and related dementias: the GREAT RCT | Health Technol Assess. 2019;23(10).

Virtual reality can improve quality of life for people with dementia

Virtual reality (VR) technology could vastly improve the quality of life for people with dementia by helping to recall past memories, reduce aggression and improve interactions with caregivers, new research has discovered | University of Kent | via ScienceDaily

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Many people with dementia (PWD) residing in long-term care may face barriers in accessing experiences beyond their physical premises; this may be due to location, mobility constraints, legal mental health act restrictions, or offence-related restrictions.

In recent years, there have been research interests towards designing non-pharmacological interventions aiming to improve the Quality of Life (QoL) for PWD within long-term care.

The authors of this study explored the use of Virtual Reality (VR) as a tool to provide 360°-video based experiences for individuals with moderate to severe dementia residing in a locked psychiatric hospital.

The paper discusses the appeal of using VR for PWD, and the observed impact of such interaction. It also presents the design opportunities, pitfalls, and recommendations for future deployment in healthcare services. This paper demonstrates the potential of VR as a virtual alternative to experiences that may be difficult to reach for PWD residing within locked setting.

Full article: Tabbaa, L. et al. |  Bring the Outside In: Providing Accessible Experiences Through VR for People with Dementia in Locked Psychiatric Hospitals | Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 2019 | DOI: 10.1145/3290605.3300466

See also: VR can improve quality of life for people with dementia | ScienceDaily

Teaching happiness to dementia caregivers reduces their depression, anxiety

Moskowitz, J. T  et al. | Randomized controlled trial of a facilitated online positive emotion regulation intervention for dementia caregivers | Health Psychology, 2019 | Vol. 38 (5): p391 – 402

Caring for family members with dementia causes significant emotional and physical stress that increases caregivers’ risk of depression, anxiety and death. A new method of coping with that stress by teaching people how to focus on positive emotions reduced their anxiety and depression after six weeks. It also resulted in better self-reported physical health and positive attitudes toward caregiving.

The intervention included teaching participants eight skills that increase positive emotions. The skills taught were:

1. Recognizing a positive event each day

2. Savoring that positive event and logging it in a journal or telling someone about it

3. Starting a daily gratitude journal

4. Listing a personal strength each day and noting how you used this strength recently

5. Setting an attainable goal each day and noting your progress

6. Reporting a relatively minor stressor each day, then listing ways in which the event can be positively reappraised or reframed

7. Understanding small acts of kindness can have a big impact on positive emotion and practicing a small act of kindness each day

8. Practicing mindfulness through paying attention to daily experiences and with a daily 10-minute breathing exercise, concentrating on the breath

Full story at ScienceDaily 

Full abstract at Health Psychology

Performing daily activities with dementia

Clarissa Giebel, Sandra Zwakhalen, Caroline Louise Sutcliffe & Hilde Verbeek | Exploring the abilities of performing complex daily activities in dementia: the effects of supervision on remaining independent | Aging & Mental Health | published online 16 April 2019

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Objectives: The aim of this study was to explore the remaining abilities of people with dementia (PwD) in performing daily activities.

Method: Informal carers of community-residing PwD were recruited across England via mail out and carer support groups. Carers completed the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 to rate the PwD’s initiative and performance of daily activities. Six complex instrumental activities of daily living (IADLs) were selected: shopping, preparing a hot drink, using the telephone, preparing a cold meal, house work, and engaging in social activities, all of which were broken down into three sub-tasks. Data were analysed using Chi-square tests and linear regression analysis, assessing the contributions of hours of IADL care, hours of supervision, and dementia stage for each activity.

Results: 581 carers of people with mild, moderate, and severe dementia completed the questionnaire. The ability to perform individual activities deteriorated from mild to moderate to severe dementia, with PwD remaining the most able to perform subtasks of preparing a hot drink and a cold meal. Subtask performance varied across activities, with some better maintained than others across severity stages. Linear regression models showed that hours of supervising PwD explained a greater proportion of the variance of each IADL than IADL care hours.

Conclusion: PwD should be supervised to continue engaging in activities, thereby avoiding performing everything for the PwD. Findings can have implications for PwD living in nursing homes, and future research should explore the remaining IADL abilities of nursing home residents.

 

Using a therapeutic companion robot for dementia symptoms in long-term care

Moyle, W. et al. | Using a therapeutic companion robot for dementia symptoms in long-term care: reflections from a cluster-RCT | Aging & Mental Health | Vol. 23 issue 3 | p329-336

Objectives: We undertook a cluster-randomised controlled trial exploring the effect of a therapeutic companion robot (PARO) compared to a look-alike plush toy and usual care on dementia symptoms of long-term care residents. Complementing the reported quantitative outcomes , this paper provides critical reflection and commentary on individual participant responses to PARO, observed through video recordings , with a view to informing clinical practice and research.

Method: A descriptive, qualitative design with five participants selected from the PARO intervention arm of the trial. The trial is registered with the Australian New Zealand Clinical Trials Registry

Results: The five participants and their responses to PARO are presented in terms of three issues: i.) Different pre-intervention clinical presentations and different responses; ii.) Same individual, different response – the need for continual assessment and review; and iii.) The ethics of giving and retrieving PARO. Implications for clinical practice and future research are discussed in relation to each issue.

Conclusion: The findings suggest that one approach does not fit all, and that there is considerable variation in responses to PARO. A number of recommendations are discussed to aid the delivery of psychosocial interventions with PARO in practice, as well as to guide future research.

Full detail at Aging & Mental Health