Family caregivers’ conceptualisation of quality end-of-life care for people with dementia

Davies, N. et al. Palliative Medicine. Published online: October 25, 2016

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.

Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.

Design: Qualitative study using in-depth interviews and analysed using thematic analysis.

Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.

Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.

Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Read the full article here

Exploring the health and well-being benefits of singing for people with dementia and their carers

Osman, S.E. et al. (2016) Dementia. 15(6) pp. 1326-1339

microphone-1674903_960_720Dementia has detrimental effects on cognitive, psychological and behavioural functioning, as well as significant impact on those who provide care. There is a need to find suitable psychosocial interventions to help manage the condition, enhance well-being, and to provide support for caregivers. This study explored the impact of Singing for the Brain™, an intervention based on group singing activities developed by The Alzheimer’s Society for people with dementia and their carers. This qualitative study used semi-structured interviews with people with dementia and their carers. Ten interviews involving 20 participants were analysed thematically. Social inclusiveness and improvements in relationships, memory and mood were found to be especially important to participants. As well as enjoying the sessions, participants found that attending Singing for the Brain™ helped in accepting and coping with dementia.

Read the article here

Using appreciative inquiry to implement person-centred dementia care in hospital wards

Scerri, A. et al. Dementia. Published online: October 6 2016


The quality of care of persons with dementia in hospitals is not optimal and can be challenging. Moreover, staff may find difficulty in translating what they have learned during training into practice. This paper report the development and evaluation of a set of workshops using an appreciative inquiry approach to implement person-centred dementia care in two hospital wards.

Staff worked collaboratively to develop a ward vision and to implement a number of action plans. Using appreciative inquiry approach, staff attitudes towards persons with dementia improved, inter-professional collaboration was enhanced and small changes in staff practices were noted. Dementia care in hospitals can be enhanced by empowering staff to take small but concrete actions after they engage in appreciative inquiry workshops, during which they are listened to and appreciated for what they can contribute.

Read the abstract here

Dementia care in care homes

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The Alzheimer’s Society has published Fix dementia care:  NHS and care homes.

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This report marks the second phase of an Alzheimer’s Society campaign looking at the experiences of people with dementia in a range of health and care settings.  It contains the results of a survey of care home managers and the voices of people with dementia, their families and carers.  The report sets out recommendations for the government and NHS to improve the experiences of people with dementia in care homes.

Additional link: RCGP press release


support for people with dementia in remote areas


N0030741 Paramedic attending a call in the countrysideImage source: Justine Desmond, Wellcome Images//cc by-nc-nd 4.0

RemoDem aimed to develop, test and evaluate services for people with dementia in remote areas of the Faroe Islands, Greenland, Sweden and Scotland. Formative and summative evaluation used a flexible research design including collection of baseline data, interviews and focus groups with key informants and data relating to service users, i.e. people with dementia and their carers.

Challenges for service providers included organisational difficulties, lack of clear information about their populations with dementia and lack of knowledge in local communities. Test sites which developed services building on their particular local starting points adopted both specialist and ‘off the shelf’ technologies and found that these were generally helpful for people with significant support needs.

Services were more successful where more mature and less experimental technologies were used. The new services promised to address effectively challenges of remoteness including distance, communication and workforce deployment issues.

Full reference: Bowes, A et al. RemoDem: Delivering support for people with dementia in remote areas Published online before printDementia April 14, 2016

Post-diagnostic dementia care

Alistair Burns. SCIE. 15th February 2016.

‘Many of us start the new year with a resolution. So it’s a good time for those of us, committed to making England a better place for people with dementia to live, to make the following one. Find out all about the recently-launched joint declaration on post-diagnostic dementia care and support and support it. Once a person with dementia has received a diagnosis it is essential that they get ongoing appropriate post-diagnostic care.

Government, health, social care and the third sector can work together to deliver high quality services to people living with dementia and their families. That’s what the new joint declaration by these bodies hopes to achieve. I’ve written recently on the NHS England blog about some of the challenges for finding medical treatments for dementia and its commonest causes. But what about care and support when someone actually has the condition?

I know SCIE is committed to improving the care and support that people living with dementia deserve. For instance, a film on their site from 2015 shows what it might feel like to live with dementia. Viewers will experience a little of what it is like to find yourself in a world that seems familiar and yet doesn’t always make sense. The incidents pictured in the film and memories recounted are based upon true experiences gathered from people living with dementia.’

Carry on reading the full article here

Palliative care, personhood and ethics in dementia

Royal Society of Medicine: Published on Feb 1, 2016

To watch the full lecture visit:

About this lecture: Dr Julian Hughes discusses the philosophical aspects of caring for patients with dementia nearing the end of life. Dr Hughes covers clinical issues in palliative care and the ethics of treating a patient with dementia. Dr Hughes also finds a philosophical explanation of personhood and the soul.

This lecture was part of the ‘Mind, body and soul: an update on psychiatric, philosophical and legal aspects of care of patients nearing the end of life’ event at The Royal Society of Medicine in London.

Higher Quality Dementia Care Report

Kasteridis, P. et al. CHE. 2016


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A key policy priority Dementia is a high-level government priority for action and the care of dementia patients in a hospital setting is a major policy focus. At any one time, a quarter of acute hospital beds in England are in use by people with dementia and compared to people with the same underlying conditions but without dementia, hospital stays are longer and costs are higher.

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Entry into emergency care can be a defining moment in the life of someone with dementia and often heralds an avoidable downward health spiral. The longer people with dementia stay in hospital, the more likely it is that they will be discharged to a nursing home, reducing opportunities for independent living.

National and international policy recognises the importance of ensuring that the wide range of support and services for those with dementia and their carers is well co-ordinated and integrated. Good quality primary care can help people to maintain their health and wellbeing and avoid unnecessary admissions to hospital or prolonged lengths of stay

Read the full report here




Different routes to success in care of dementia

Three leading models of how to care for people with dementia are being flagged up to the NHS in a bid to improve patient services by sharing learning.

Thousands of people are benefiting from the thriving schemes at Gnosall, Northumberland, and Rotherham and Doncaster and are highlighted in a new report from NHS England.

Patient benefits include: 100 per cent appointment attendance rates, minimal delays, reduced A&E care, less use of mental health services, reduction of fear and stigma, accessibility, choice, specialist tests close to home, only giving information once and having clear agreed care plans.