Respite Care for People with Dementia and their Carers

Emma O’Shea et al. | Respite Care for People with Dementia and their Carers: A Qualitative Study with Multiple Stakeholders | Age and Ageing | Volume 48, Issue Supplement 3 | September 2019 | Pages iii17–iii65

Background

Traditional models of respite, particularly those based within residential care settings, may not always be effective, and there is evidence of low acceptability for some people with dementia and carers. The aim of this study was to synthesise multiple stakeholders’ experiences of respite services for dementia and their perspectives on respite service development.

Methods

Purposive sampling was employed. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n=6), carers (n=9), front-line staff (n=7), managers (n=8), policy-makers/academics (n=5). Data were interpreted inductively using thematic analysis, with a focus on latent patterns of meaning.

Results

Three salient themes were identified (‘Phases of Transition’, ‘Person-centred Respite Care’; and ‘Recalibrating Respite’). Three distinct phases of respite transitions for people with dementia and carers are discussed. Respite services that actively support transitions through empathic communication regarding clients’ concerns, support needs and preferences are highly valued. Clients described care resembling a ‘person-centred’ approach as their ideal, without using that term, but people with dementia do not always experience this type of care. The majority of providers indicated that they provide ‘person-centred care’, but many demonstrated a poor understanding of the concept; many of these providers have a biomedical view of dementia and the personhood status of people with dementia. Regarding service development, clients would prefer more choice, flexibility and responsiveness, including a shift away from residential provision towards an integrated continuum of personalised, strengths-focused community-based and in-home supports.

Conclusion

Any recalibration of respite towards a home/community focus will require a transformation in how dementia is constructed by society, as well as a significant financial investment. Other implementation considerations include: staffing and staff competency; and the co-ordination, integration and regulation of personalised, home-based care models. Finally, it may be necessary to replace the outdated term ‘respite’ with an alternative nomenclature that is not discordant with person-centred care principles.

Why it’s important to review the care of people with dementia

Why it’s important to review the care of people with dementia | Healthwatch 

This report summarises data and people’s experiences about social care reviews, reassessments and their outcomes for people with dementia. It also includes recommendations.

Over 850,000 people live with dementia in the UK. One widely reported challenge is the impact dementia has on families and friends, and how it can be a constant struggle to get the right support from social care services.

As dementia is a degenerative condition, The Care Act states that people are entitled to regular reviews to ensure care meets their changing needs. However, when we analysed data from 97 local councils, Healthwatch found people were not getting what they were entitled to.

Full report: Why it’s important to review the care of people with dementia

Ten minutes of social interaction improves wellbeing  in dementia care

Alzheimer’s Society | July 2018 | Ten minutes of social interaction improves wellbeing  in dementia care

Spending ten minutes interacting with people with dementia in care homes can benefit their wellbeing. The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care.  Carers were encouraged to discuss the patient’s interests and involve them in decisions about their care.  The Improving Staff Attitudes and Care for People with Dementia e-Learning (tEACH) study, conducted by the University of Exeter Medical School and King’s College London in partnership with the Social Care Institute for Excellence (SCIE), was presented at the recent Alzheimer’s Association International Conference 2018. The study involved 280 residents and care staff in 24 care homes over a nine- month period.

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Carers participated in an e-learning programme, carers who participated via Skype  continued to deliver improved resident wellbeing four months after the trial was completed. Although boh treatment arms improving resident wellbeing and staff attitudes to person-centred care.

Dr Doug Brown, Chief Policy and Research Officer at Alzheimer’s Society, said:

‘It’s unacceptable that people in care homes only get ten minutes of social interaction each day. What we need is a person-centred approach to care, that takes into account each individual’s unique qualities, abilities, interests, preferences and needs.

‘This study supports what we know from our own research – training is crucial in order to provide this type of individualised care, activities and social interactions, which can have a significant impact of the well-being of people living with dementia in care homes (Source: The Alzheimer’s Society).

Related:

Press release:

University of Exeter Just ten minutes of social interaction a day improves wellbeing in dementia care

In the news:

Science Daily  Just 10 minutes of social interaction a day improves wellbeing in dementia care

Dementia – the true cost

Dementia – the true cost: fixing the care crisis | Alzheimer’s Society 

This report from Alzheimers Society is based on qualitative research from five listening events with people affected by dementia, social care professionals and dementia lead nurses in Winchester, Newcastle, Birmingham, Cardiff and Belfast. In total, evidence and testimony was gathered from over 70 people to get an in-depth understanding of the challenges they face day-in and day-out to get the care they need.

The report highlights the inadequacies in the care system regarding dementia patients. The number of potentially unnecessary hospital admissions among dementia patients has risen by 73% across 65 hospital trusts, from 31,000 in 2012 to around 55,000 in 2017. Some of this apparent increase may be attributable to better recording over that period  but the report said that this could not account for the full increase.

Full report: Hutchings, R. Carter, D.& Bennett, K. | Dementia – the true cost: fixing the care crisis  | Alzheimer’s Society | May 2018

See also: Dementia patients ‘abandoned’ by system | BBC

Dementia research must study care as well as cure

In this article, Doug Brown, Chief policy and research officer at Azheimers Society explores research investment in dementia.  He finds that there is a strong focus on finding a cure, with less than 5% of funding studying the best possible care for those affected | Story via The Guardian

The need for a cure for dementia is as pressing as ever, but we also need care research to develop practical solutions that can benefit people with the condition and their carers. In this article, Doug Brown argues that Improving knowledge and practices among health and social care professionals, as well as the quality and inclusivity of the wider system, is just as important as developing medical treatments.

A new Alzheimer’s Society report asked researchers, people with dementia, and the professionals who support them to help create a roadmap for the research needed to deliver these improvements. The roadmap offers five key goals:

  • Increase knowledge of risk factors to prevent future cases of dementia
  • Maximise the benefits of seeking and receiving a dementia diagnosis
  •  Improve quality of life for people affected by dementia
  •  Enable the dementia workforce to deliver improved practice
  •  Optimise quality and inclusivity of health and social care systems

These broad research goals are broken down into recommendations and an action plan that will help achieve them.

Full article via The Guardian

Related: Dementia research roadmap for prevention, diagnosis, intervention and care by 2025 | Azheimers Society

 

 

Dementia prevention, intervention, and care

Livingston, G. et al. | Dementia prevention, intervention, and care | The Lancet , Volume 390 , Issue 10113 , 2673 – 2734

This article argues that there is a potential for better disease prevention and for care to offer more improvements to the lives of a growing number of people with dementia.

To reduce dementia incidence, article authors recommend active treatment of hypertension for all people over 45 without dementia. Furthermore, they estimate that interventions into such risk factors as childhood education, exercise, maintaining social engagement, reducing smoking, and management of hearing loss, depression, diabetes, and obesity might have the potential to delay or prevent a third of dementia cases.

Full paper available via The Lancet

 

Post-diagnostic support for adults with an intellectual disability and dementia

Study finds, Post diagnostic support is essential for the general population, and within the intellectual disability field, needs to be individualized and adapted to the person’s needs as dementia progresses.

Abstract

Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death.

Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services.

Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person’s needs as dementia progresses.

Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Full reference:  Dodd, K et al. | Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support. | Aging & Mental Health | Published online: 07 Sep 2017