Research summaries (SO21)

The research papers summarised here are selected for their relevance and importance to dementia care practice by the section editors, Hazel Heath and Sue Benson. We welcome suggestions of papers to be included. If you would like to contribute a summary or a short comment on an important research paper recently published, drawing practitioners’ attention to new evidence and key points that should inform practice, please contact sue@dementiapublishing.community

Young-onset dementia treatment preferences

Persons living with young-onset dementia experience emotional distress as they cope with an unexpected progressive illness during an active life stage (typically 45-64 years). Despite this, psychosocial resources are limited and lack the specificity to meet the unique needs of both partners. To gain an in-depth understanding, these researchers conducted semi-structured dyadic interviews with persons with young-onset dementia and their partners. They identified 12 themes across four domains (1) perceptions of available and lacking resources (2) preferences for program content (3) preferences for program format and (4) barriers and facilitators to participation. Couples indicated that there is a lack of specific and family-orientated resources, which can create more stress and relationship strain. Couples endorsed support for a virtual, dyadic intervention delivered shortly after diagnosis focused on providing tools to cope with difficult emotions and symptom progression, and to enhance communication and meaningful daily living. They also identified potential barriers to program participation and offered suggestions to promote engagement.

Grunberg VA, Bannon SM, Reichman M et al. Psychosocial treatment preferences of persons living with young-onset dementia and their partners. Dementia. Published June 21 2021. doi.org/10.1177/ 14713012211027007

Motivational health coaching for caregivers

Caring for a family member with dementia can negatively impact on a person’s mental health and developing effective strategies can be difficult. This study sought to evaluate the impact of an intervention comprising telephone calls using a health coaching approach with motivational interviewing. This was delivered over six weeks to a group of caregivers for people with dementia with 53 in the intervention group and 53 in a control group. Variables measured were: self-efficacy of caring, depression, perceived stress, frequency of problematic behaviours and dysfunctional thoughts. Assessments were baseline, post-intervention and three months post-intervention. Significant improvements in the intervention group were found between baseline and post-intervention assessments with improvements in self-efficacy, decreased stress and decreased dysfunctional thoughts. The authors conclude that the mental health of caregivers for people with dementia improved after the interventions and these improvements were maintained over time.

Sarabia-Cobo C, Perez V, de Lorena P et al. Effectiveness of a telephone intervention based on motivational health coaching for improving the mental health of caregivers of people with dementia: a randomised controlled trial. International Journal of Older People Nursing. Published August 1 2021. doi.org/10.1111 /opn.12398. Open access.

Enhancing autonomy in care facilities

This study explored how residential care facility (RCF) staff can enhance autonomy and improve informal care by looking at the influence of interactions (contact and approachability between residents, staff members and informal caregivers) and the physical environment including the use of technologies. Methods included document analyses, semi-structured interviews with staff and relatives and observations of residents across two RCFs. The study found that the behaviour, attitudes and interactions of staff members with residents and informal caregivers appeared to contribute to the autonomy of people with dementia and enhance informal care provision. The physical environment and the use of technologies were less relevant to enhancing autonomy and informal care provision, although they can support staff members providing person-centred care in daily practice. The findings provide insight for other RCFs on how successfully to enhance autonomy for residents and how to implement person-centred care.

Boumans J, van Boekel LC, Verbiest MEA et al. Exploring how residential care facilities can enhance the autonomy of people with dementia and improve informal care. Dementia. Published July 2 2021. doi.org/10.1177 /14713012211030501

Frontotemporal dementia (FTD) carer support needs

FTD is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of ‘non-typical’ symptoms. Informal carers of people with FTD experience high levels of overall burden. This systematic review aimed to describe the subjective experience of being an informal carer of a person with FTD to identify the specific needs, coping strategies and helpful support resources for this carer population. Systematic review of studies identified six themes (1) ‘challenging road to and receipt of diagnosis’ (2) ‘relationship change and loss’ (3) ‘challenging experiences in caring’ (4) ‘positive experiences and resilience’ (5) ‘coping’ (6) ‘support needs. Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. The authors conclude that there is a lack of knowledge on the unique needs of carers for people with FTD and highlight the importance of public awareness campaigns and healthcare professional education.

Tookey SA, Greaves CV, Rohrer JD, Stott J. Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review. Dementia. Published June 11 2021. doi.org/10.1177/14713012211022982

Experiences of cognitive assessment

In primary care a cognitive assessment is offered to persons with suspected dementia with referral to a specialist clinic if required. This process, with the likelihood of receiving a dementia diagnosis, is surrounded by uncertainty with long waiting times. Although neuro-psychological symptoms (NPS) are common among persons with cognitive impairment, these are not routinely addressed during a cognitive assessment. This research conducted interviews with 18 participants who had completed a cognitive assessment and the Neuropsychiatric Inventory [NPI] was incorporated into the questions. Experiences of the assessment process ranged from ‘feeling valued’ to ‘feeling abandoned in the absence of follow-up support’. A diagnosis of mild cognitive impairment was experienced as abstract and devoid of follow-up support.
A lack of preparedness for the assessment existed among participants and some experienced the process as ‘standardised’. One half of participants self-reported the presence of one to four NPS, with irritability and depression being most common. The authors highlight a need for a more inclusive and meaningful person-centred assessment process, including the NPI, with pre-assessment counselling and follow-up support.

Tyrrell M, Hedman R, Fossum B et al. Feeling valued versus abandoned: Voices of persons who have completed a cognitive assessment. International Journal of Older People Nursing. Published: July 7 2021. doi.org/10. 1111/opn.12403. Open access.

Effects of dance on cognitive function

This Canada-based systematic review and meta-analysis explored the effects of dance across seven cognitive domains: global cognitive function, executive function, learning and memory, complex attention, language, social cognition and perceptual-motor function. The review concluded that dance probably improves global cognitive function but probably has no effect on executive function (assessed as cognitive flexibility). Findings on the effects of dance on other aspects of functioning were mixed. The authors conclude that dance is a promising therapeutic intervention for older adults looking to improve their cognitive health. They commend a core outcome set specifically for cognition and dance. Further research is needed to determine the optimal dose and whether dance results in greater cognitive benefits than other types of physical activity and exercise.

Hewston P, Kennedy CC, Borhan S et al. Effect of dance on cognitive function in older adults: a systematic review and meta analysis. Age and Ageing. 2021. 50(4) 1084-1092. doi.org/10.1093/ageing/afaa270. Open access

Dementia with Lewy Bodies psychosocial intervention

Dementia with Lewy Bodies (DLB) is a complex dementia which affects multiple body systems and can pose substantial demands on family care partners. This study used a group-based intervention attended by people with DLB and a family care partner for up to four successive weeks in a Memory Assessment Centre in the Northeast of England. The 13 core intervention topics covered the predominant cognitive, behavioural and physical changes associated with DLB, including sleep disturbances, visual hallucinations and changes in thinking and memory. Following the intervention, care partners reported that they felt more in control and able to cope in 3-13 of the areas with 73% feeling this way in eight or more areas. Three themes were identified from post-intervention interviews: (1) ‘people like us’ (solidarity with others in a similar position, peer experience and the opportunity to compare coping strategies) (2) ‘outcomes from being a group member’ (feeling more informed, more confident to cope and finding new coping strategies) and (3) ‘intervention design’ (resources were well received, particularly a handbook, gratitude diaries and introduction to mindfulness). The study concluded that a DLB-specific group intervention is acceptable to people with DLB and family care partners. Participation may enhance understanding of this condition and reduce social isolation. It may improve care partners’ coping capability particularly if targeted towards those with low prior understanding of DLB and more stress. Means of evaluating outcomes for people with DLB need further development.

Killen A, Flynn D, O’Brien N, Taylor J-P. The feasibility and acceptability of a psychosocial intervention to support people with dementia with Lewy bodies and family care partners. Dementia. Published June 25 2021. doi.org/10.1177/14713012211028501

Montessori-Based Programming (MBP)

MPB in dementia care refers to a growing body of research and practice that has developed Montessori methods to facilitate self-paced learning, independence and engagement for people living with dementia. This study investigated the use of MBP in the United Kingdom. Using in-depth semi-structured interviews with key stakeholders with experience of MBP, it developed a framework describing knowledge and understanding of MBP in the UK, implementation considerations, challenges and barriers, evidence of outcomes and research gaps to guide researchers and practitioners. Implementation considerations included using a whole-home approach and changing the culture of care through management support. Barriers to implementation included conservative attitudes to care, perceived lack of time and resources, health and safety issues, and issues of sustainability. The authors conclude that initial evidence suggests that MBP can produce positive outcomes and manage negative outcomes for people with dementia, but there remain gaps in knowledge and research regarding a uniform understanding of MBP, its processes, attributable outcomes, economic value, training and development.

Raghuraman S, Tischler V. ‘The Jigsaw Culture of Care’: A qualitative analysis of Montessori-Based programming for dementia care in the United Kingdom. Dementia. Published May 23 2021. doi.org/10.1177/14713012211020143. Open access.

End of life care

Focus groups and semi-structured interviews with residential or care managers in Australia identified six themes (1) ‘laying the ground work to establish what families understand about dementia’ (2) ‘playing the peacemaker in the face of unrealistic family demands and expectations’ (3) ‘chipping away at denial and cultivating a path towards acceptance of death’ (4) ‘recruiting general practitioners as allies’ (5) ‘supporting and strengthening the front line’ and (5) ‘dedication to optimal care is relentless but rewarding’. The managers described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident’s terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions and partnership building between care staff and general practitioners are all required to promote optimal end of life dementia care in residential care settings.

Borbasi JAL, Tong A, Ritchie A et al. “A good death but there was all this tension around”: perspectives of residential managers on the experience of delivering end of life care for people living with dementia. BMC Geriatrics. 2021. 21:306. doi.org/10.1186/s12877-021-02241-7. Open access.

Nursing home staff challenges and competence

This study aimed to determine the situations that nursing staff in nursing homes found challenging in caring for people living with dementia, to determine the specific competencies required to support and care for these people and to contribute to a model outlining competences that dementia care nurses require. Conducted in Finland, it used mixed methods including survey and a structured questionnaire with open-ended questions. In the results 98% of nurses reported that challenging situations occurred daily or weekly, most commonly wandering, restlessness, constant leaving, repeated inquiries and opposition to treatment. Five key competences were identified: practical knowledge, theoretical knowledge, therapeutic use of self, social competence and self-management. Findings also indicated significant correlations between leadership and both the impact of challenging behaviour on coping at work and the use of physical restraints. The authors highlighted a need to identify specific competencies for caring for people with dementia, particularly the therapeutic use of self, the support of supervisors and a need to update official guidelines for handling such situations.

Piirainen P, Pesonen H-M, Kyngas H. Challenging situations and competence of nursing staff in nursing homes for older people with dementia. International Journal of Older People Nursing. Published June 1 2021. doi.org/10. 1111/opn.12384. Open access.

Locating technologies

Locating technologies aim to support persons with dementia by helping manage spacial orientation impairments and provide aid to care partners by intervening when necessary. A variety of locating devices are commercially available but their adoption has remained low. For this study 22 professionals working in business, healthcare and research related to gerontology participated in a focus group. They identified six key barriers to adoption centring on awareness, technological and product characteristics, capital investment-based limitations, unclear benefits and ethical concerns. Themes on services and support strategies were also identified. This study expands knowledge on barriers to the adoption of locating technologies for dementia care and reinforces recommendations that an interdisciplinary strategy is needed to optimise adoption. The findings also show that focusing on services to increase digital autonomy and on information dissemination strategies has been largely overlooked but may be particularly effective.

Freiesleben SD, Megges H, Herrmann C et al. Overcoming barriers to the adoption of locating technologies in dementia care: a multi-stakeholder focus group study. BMC Geriatrics. Published June 21 2021. doi.org/10.1186/s12877-021-02323-6. Open access.