What is “essential” about dementia care?

Dr Shibley Rahman is an academic physician interested mainly in dementia and frailty. He tweets at @dr_shibley

I have often wondered what ‘essential dementia care’ looks like. It must include treating people with respect and dignity.

Failures in dementia care, sustained for a long period of time, however obligate a more detailed response. The concept of personhood was first applied to people with dementia by Tom Kitwood (1997). The concept is used generally to describe what makes up the attributes of “being a person” (Dewing, 2008). According to Kitwood (1997), personhood is ‘a standing or status that is bestowed upon one human being, by others, it implies recognition, respect and trust’. Therefore “dementia care” is potentially a deceptively simple term because respecting personhood means that people are not defined primarily by their conditions.

World first study reveals admitting an older relative in temporary respite care can be a deadly mistake

A world first study into deaths of Australians admitted into aged respite care – usually to provide a planned or emergency break for their carer – reveals that older people in respite care are significantly more likely to die from preventable injury causes such as falls than those who are permanent nursing home residents.

The study found that preventable deaths from choking are twice as high as for long term residential care. Other preventable deaths such as from suicide are also higher in these temporary residents.

The research – published in Age and Ageing journal, by Monash University researchers – has serious implications for the 80% of older Australians who are cared for in the community by spouses, family members and friends. Of these more than 50,000 go into temporary respite care each year.

Qualitative Research in Age and Ageing

This themed collection of Age and Ageing articles includes a selection of papers published over the last 10 years which highlights the value of qualitative methodologies in health services research, particularly in understanding patient experience of health and illness and decision making about treatment and preventive care. We hope this issue will raise awareness of the scope for further contributions and encourage authors to submit papers reporting qualitative studies to the journal.

Summary of topics and themes:

In an editorial in Age and Ageing ⁽⁵⁾, we drew attention to the way in which the application of qualitative research methods within the social science disciplines of sociology, anthropology and social psychology can enrich understanding of ageing and illness: for example, through eliciting the meaning and process of ageing, health and illness from the perspective of older people; the practice of service delivery and what shapes it; and the beliefs, values and ‘taken for granted ‘knowledge that professionals may apply in their work with older people.

Hidden Carers – sharing the stories of older male carers

Louise Bate is an Engagement and Communications Officer with Healthwatch Dorset. Healthwatch is an independent watchdog, working to help people get the best out of their local health and social care services. Healthwatch enables local people to influence the delivery and design of local services, by sharing their views with health and care commissioners and providers: www.healthwatchdorset.co.uk 

More than 51,000 carers in England are men aged over 85; a number that has more than doubled in the last decade. It’s such a huge number of people that it’s hard to imagine. We wanted to make the numbers real – so we’ve been working with Bournemouth University and the Carers Support Service to listen to older male carers, gather their stories and give them a stronger voice.

Carers over the age of 85 are the only demographic of carers where men outnumber women (59%). Men are more likely to become carers in older age than at other times in their life and usually as a result of caring for their partners.

Inspiring carers – all too often overlooked

Alex Greenwood is a recent graduate who’s been exposed to the realities of domiciliary care through her work with Konnektis, a hub digitizing social care and communication, facilitating better care for those in their own homes. She tweets @konnektis 

Having lost my grandparents at an early age, I had very limited understanding of the realities of care. Through my work with Konnektis, and the inherently person-centred process of co-design, I am gaining privileged access to the outstanding work of carers. A commonly misunderstood and under-appreciated profession, carers have  been absorbing the the pressures of our overstretched care system for years and the sector is now at breaking point. Whilst recent public concern over sustainability of care in the context of an aging population is an important debate, it is these inspiring carers – all too often overlooked – whose stories I wish to share in this space.

The chasm of dementia; a carer’s perspective

Sue Newsome supported her Father during the last year of his life after he was diagnosed with Vascular Dementia. In this blog she shares her thoughts and feelings from a carer’s perspective.  

Supporting someone with Dementia is a contradiction of what it is ok to feel and the guilt about those feelings. A whole raft of thoughts, feelings and behaviours that I continually checked and reviewed. My relationship with Dad changed, he had never said he was scared before and I was to hear this from him throughout his Dementia journey.

Initially in his phone call to me telling me ‘Sue I am scared I am having a Stroke’ which although slurred was articulate, to the same feeling the night before he died when despite his end stage Dementia and aspiration pneumonia, when he struggled to breathe, he managed to say ‘I’m scared’. His fear and mine punctuated our relationship for the last year of his life. Our fear of the future what it held and how we could adapt. It felt like I held my breath for a year. Living on adrenaline, the skipped heartbeat when the phone rang, what had happened to Dad this time!

The key to happy retirement… independence

Sarah Wallace, Head of Services at the Charity Crossroads Care CNL, talks about their Homeshare programme and how it is a scheme that helps older people keep their independence and remain in the home they love. 

I like to think that as I get older, I will be able to keep my independence.  But will increasing care costs mean that I’ll just struggle alone at home?  Recently, I met Felicity who has recently struggled with ill health, meaning that she has had to consider alternative ways to maintain her independence.  In this search, Felicity came across the new Homeshare programme which we run here at the charity Crossroads Care CNL.

Perfect match

The Homeshare scheme uses a ‘matching’ service which helped Felicity find someone to share her house with because her disabilities make it tough for her to live alone.  The Homeshare scheme has changed her life and that of her sharer.

Who will care for the carers?

Sharon Xiaorong Wang is a  nurse researcher at the Center of Research on Aging, Jinan, Shandong, China and is the lead investigator for the Chronic Disease Self-Management Program at the Department of Gerontology, Jinan Central Hospital.

The association between chronic disease and carers of patients with dementia has been well described in the literature. Caring for patients with memory impairment can put a strain on the health [both physical and mental] of the care-giver. Up till now, the demographics and scale of chronic disease afflicting care providers have not been well explored. We have conducted a study to examine the prevalence of chronic disease in carers of patients with dementia.

Our results indicate that more than four-fifths of care-givers reported having at least one chronic disease, and nearly two-thirds reported multiple.