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Dementia

Person-centred dementia care during the COVID-19 pandemic

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The COVID-19 pandemic has presented unique challenges for people living with dementia, as well as for those who support them. Tracey Carter, senior quality manager (dementia care) at Exemplar Health Care, shares how colleagues across the company have found innovative ways to support people living with dementia to stay safe and well, and uphold the principles of person-centred care

 

It’s vital that health and social care workers, other professionals and family carers continue to take a person-centred approach to care during the pandemic, to support people with dementia to maintain, and enhance, their health and wellbeing. 

Putting people first

There are currently around 850,000 people living with dementia in the UK, each with their own unique personalities and life stories. Everyone will experience the pandemic and its effects differently, which is why it’s important to maintain a person-centred approach. 

Tracey Carter

At the start of lockdown, care homes were cut off and isolated from the wider community which posed a significant shift for service users and care workers. 

In response, we quickly adapted many of our ways of working, systems and processes to adhere to national guidelines and safety policies.

However, when it comes to our approach to care at this time, there’s not a ‘one size fits all’ approach. 

We adapted and adopted a creative approach to ensure that the same quality of person-centred care was achieved with lockdown restrictions in place.

To achieve this, Exemplar Health Care divided its approach into four key areas of need. 

The needs of people living with dementia 

One of the most important things for us was to identify how each individual communicates pain and discomfort, so we could monitor them for signs of Coronavirus (COVID-19).

Some older people living with dementia may have different symptoms or are unable to communicate when they are experiencing one of the common symptoms of the virus.

We provided training to support our care teams to look for signs that might indicate that people have the symptoms of Coronavirus (COVID-19), such as changes to their personality or everyday behaviours. 

We also assessed potential communication challenges, like the use of full PPE which could frighten or upset people living with dementia, and continue to work with individuals and their loved ones to ease any stress. Some examples are wearing a name badge and photo on clothing, using drawings or written words to communicate and playing music to aid relaxation. 

Combatting loneliness

Combatting loneliness has been a huge priority during the pandemic. At Exemplar Health Care, we’ve kept the same colleagues working on our units so that people are supported by a consistent team who know them, which is fundamental to person-centred care. 

Our teams continue to be creative in supporting people to take part in meaningful activities and engagement in our homes – including doing everyday living tasks such as laundry and cleaning to give people a sense of familiarity, routine and purpose. 

Where possible, we’ve brought the outdoors inside when people are not able to go out. For example, our activities teams have supported flower arranging or plant potting inside, as well as creating indoor beaches, to support people to maintain their hobbies and interests. 

We’ve also made good use of technology during times of lockdown. At the beginning of the pandemic, we purchased iPads for each of our homes which have enabled residents to stay in touch with their loved ones, as well as provided opportunities for meaningful activity, such as virtual tours of tourist attractions or playing music. 

The spaces in our homes have always been personalised to the people we support, with decorations, photos and posters tailored to their interests – this became even more important during the pandemic, as maintaining interests became key to combat loneliness and frustration. 

Family/loved ones’ needs 

Families have found it incredibly difficult not being able to physically see and be with loved ones during the lockdown period. 

Throughout the pandemic, we’ve supported people to keep in touch via video calls, using systems such as Skype and Zoom. 

When visiting was permitted, we implemented individual risk assessments to support safe visits, outlining what support individuals might need during visits. We also made all the efforts to ensure that visits happened when people wanted them. 

Several of our homes have assigned a new Family Liaison role, whose responsibility is to keep in touch with family and friends, and facilitate communication between service users and their loved ones.  

Multidisciplinary team needs 

Teams across the company, and externally, have utilised tools such as Skype and FaceTime to carry out assessments and discuss people’s needs to ensure that we can continue to provide high quality care during the pandemic. 

Where safe and appropriate, we’ve allocated in-house specialists, such as quality managers and trainers, to specific homes so they can support colleagues without travelling between homes. 

We have continued to work with external teams, such as community nurses and palliative teams, throughout the pandemic to maintain standards of care.

We’re also working as closely and pre-emptively as we can with local GPs and other community-based services who are no longer able to make face-to-face visits to homes, to see and assess residents virtually. 

Support for colleagues

Care work is extremely rewarding, but can be inherently stressful. The pandemic presented unique challenges to colleagues, taking a toll on everyone’s wellbeing.  

Knowing that colleagues who are well, happy and engaged are more likely to provide quality care, Exemplar Health Care implemented a ‘We Care’ package to support colleague wellbeing. 

We started working with a new Employee Assistance Programme partner to provide colleagues with 24/7 support from a team of trained counsellors, as well as growing our team of in-house Mental Health First Aiders. 

Our specialist dementia quality manager has continued to work with each home to provide training and identify the best ways to support residents living with dementia during the pandemic, so that we can continue to uphold the principles of person-centred care.

This has been supported by short online videos and an enhanced eLearning schedule, so that we can continue to ensure that colleagues feel supported, and have the right skills and knowledge to maintain standards of care, despite the challenges of lockdown. 

About Exemplar Health Care 

Exemplar Health Care is a provider of specialist nursing care for adults living with complex and high acuity needs. 

Our community-based homes provide person-centred care and rehabilitation that focuses on maximising independence, building everyday living skills and empowering people to live as fulfilled lives as possible.

We have over 30 homes across Yorkshire, the Midlands, North East and North West. 

Read more about Exemplar Health Care.

About Tracey Carter

Tracey Carter is a senior quality manager (dementia care) at Exemplar Health Care. She’s responsible for ensuring that Exemplar Health Care’s 32 care homes have dementia-friendly living environments and that colleagues receive the right training to be able to support people living with dementia in a person-centred way. 

Dementia

50,000 call on government to fix broken dementia research promises

Alzheimer’s Research UK has pleaded with the UK government to invest in dementia studies, as it promised to do back in 2019.

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More than 50,000 people have signed a petition to ask the UK government to double its funding for dementia research and keep the promises it made two years ago.

Boris Johnson initially said there would be £160 million invested into the sector in the 2019 Conservative manifesto, but there has been a lack of movement in this area since.

This has spurred the Alzheimer’s Research UK charity to launch the petition, calling on Number Ten to help fund possible treatments for dementia.

The pandemic has been particularly hard for those with the disease, with a quarter of COVID-related deaths coming from this group.

The charity feels the sector has been neglected in recent years with David Thomas, head of policy at Alzheimer’s Research UK, saying the funding is the best chance of curing the condition.

“Dementia research is an area of huge need,” he said. “There are a huge number of people affected by it and with an aging population that will only increase.

“There are currently no treatments in the UK for the disease so we think research is vitally important to tackling that.

“We’ve seen an historic underfunding for dementia research. When the Conservatives announced their manifesto and made a commitment to double dementia research funding we thought that would be a great step forward.”

An Alzheimer’s Research UK supporter has also made a personal plea with the government to change this.

Olive Munro lives with vascular dementia and this week she submitted a letter to the Prime Minister asking him to make sure future generations do not suffer the same fate as her.

“She supports our campaign,” David said. “Her letter set out the impact that her diagnosis has had on her life and ultimately she wants to ensure that her children and grandchildren don’t have to go through a similar terrible situation.”

“I think it’s a really powerful message Mrs Munro has sent.”

The pandemic has been a big player in regards to this underfunding, but its impact on those with dementia has only heightened these concerns.

As well as this a lack of finances have meant that a number of researchers across all sectors have been lost, only making the situation worse.

This is why the charity has chosen to call on the government now. With the crisis in its latter stages Alzheimer’s Research UK wants to see a similar success that has come about from the vaccination programme.

“We understand that COVID has played its part,” David said. “It has had a significant impact on government priorities and we’re very sensitive to the fact that since the promises were made we have been in this crisis.

“But with the pandemic moving into a different stage and the vaccine programme being such a big success, now feels like the right time to meet that commitment.

“COVID has had a devastating impact on people living with dementia, so we think the pandemic has made this more urgent not less urgent.”

There is support across parliament for this investment, with over 100 MPs across all major parties supporting the move.

The petition has also been signed by some famous names, including Dame Judi Dench, Julie Walters, Stephen Fry and Dame Harriet Walter.

If it were to progress and the government were to double dementia funding then it would have a profound impact on the sector. 

“Ultimately what we hope that funding will lead to is new treatments in this space that will ultimately stop the progression of the disease, which we haven’t got at the moment.

“We also hope it will lead to improvements in detection and diagnosis of the disease as that is really important.

“One particular thing we think the additional funding could do is ensure that we don’t lose a generation of researchers and that we keep and expand that talent, because that’s the people who will be responsible for delivering those life changing treatments.”

Away from the UK there has been some progress in this area.

In America the first dementia treatment in over 20 years was approved recently, which is a landmark move.

David is hoping this can send a clear message to the UK government that progress for this really is possible.

Many in the research industry are hoping this will lead to the approval of further treatments, as well as more investment from big pharmaceutical companies.

There is certainly the appetite for these changes, as Alzheimer’s Research UK has shown, but it is now in the government’s hands to act upon this.

“We have over 50,000 people who have signed the petition and we are well aware that behind each one is a story around the impact dementia has had on them,” he said. 

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Dementia

Novel target shows promise in treating Alzheimer’s and related dementias

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Researchers remain perplexed as to what causes dementia and how to treat and reverse the cognitive decline seen in patients.

In a first-of-its-kind study, however, researchers have discovered that cis P-tau, a toxic, non-degradable version of a healthy brain protein, is an early marker of vascular dementia (VaD) and Alzheimer’s disease (AD).

Their results define the molecular mechanism that causes an accumulation of this toxic protein.

Furthermore, they showed that a monoclonal antibody (mAb) that targets this toxic protein was able to prevent disease pathology and memory loss in AD- and VaD-like preclinical models.

Additionally, this treatment was even capable of reversing cognitive impairment in an AD-like preclinical model.

The study was conducted by researchers at the Medical University of South Carolina (MUSC) and Beth Israel Deaconess Medical Center (BIDMC) at Harvard Medical School.

Onder Albayram, co-lead author and assistant professor in the Division of Cardiology in the Department of Medicine at MUSC, said: “We believe our findings have not only discovered cis P-tau as a previously unrecognized major early driver of VaD and AD but also identified a highly effective and specific immunotherapy to target this common disease driver for treating and preventing AD and VaD at early stages.”

Aging is a normal part of life – we experience weakening of our bones and muscles, stiffening of our blood vessels and some memory lapses.

But for around 50 million people worldwide, these memory lapses become progressively more severe, ultimately leading to a diagnosis of dementia.

Dementia is an umbrella term that covers AD, which accounts for 60 to 80 per cent of cases; VaD, the second most common cause; and other less common pathologies.

Currently, there are no effective treatments for AD. Interestingly, most AD cases have a vascular component, suggesting a broader relationship between cognitive function and healthy brain vasculature.

A better understanding of that relationship could provide a platform to discover novel therapeutic targets.

“Our work provides evidence that cis P-tau may be a pathogenic factor that explains VaD, which is not generally linked to other dementias,” added Chenxi Qiu, co-lead author and a postdoctoral research fellow at BIDMC, Harvard Medical School. 

In a preclinical model of VaD, young mice showed signs of brain inflammation and memory loss within one month.

However, treating these mice with the cis P-tau mAb prevented neural degradation and cognitive decline out to six months. In a separate preclinical model of AD, old mice showed severe cognitive impairment.

This severe impairment was significantly reversed when mice were given the cis P-tau mAb. 

“These data show that cis P-tau could be an early upstream pathogenic factor common to both diseases,” said Albayram.

Translating information gained from preclinical models to humans is often difficult, but this study offers reasons to be optimistic.

Accumulation of cis P-tau caused dramatic changes in the genetic architecture of affected cells in a VaD model; these changes were consistent with those seen in human AD patients.

The researchers went on to show that treatment with the cis P-tau mAb reversed 85 to 90 per cent of those changes suggesting the power of this potential therapy.

“The genomic landscape really adapts after the silencing of this toxic protein,” said Albayram. “That was a big discovery.” 

Not only are Albayram and Qiu excited about these findings, but colleagues at MUSC are already quite enthusiastic about this work.

The research opens the door for new potential immunotherapies and highlighted several new areas of research that need to be explored.

While the researchers delineated a pathway that leads to the accumulation of cis P-tau, the underlying linkage between vascular abnormalities and activation of the pathway needs to be identified.

A better understanding of how toxic cis P-tau interacts with the healthy trans P-tau could provide further insights into the progression of AD disease.

AD and VaD might not be the only diseases affected by high levels of cis P-tau. Other brain disorders with a vascular component might also arise from this toxic protein, but further study will be required to establish such a link.

“Cis P-tau may be a common, early and pathogenic factor underlying traumatic brain injury, VaD and AD,” said Qiu.

As we get older and our memory begins to lapse – misplacing our car keys or forgetting the name of a new acquaintance – we fear the possibility that these are the first signs of dementia.

And while there is currently no approved treatment to reverse the physiological effects of dementia, this new research may provide hope that new therapies are around the corner.

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Dementia

Aerobic exercise and cognitive function in older adults – new findings

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Increasing evidence shows that physical activity and exercise training may delay or prevent the onset of Alzheimer’s disease (AD).

In older people, aerobic exercise training increases grey and white matter volume, enhances blood flow, and improves memory function.

The ability to measure the effects of exercise on systemic biomarkers associated with risk for AD and relating them to key metabolomic alterations may further prevention, monitoring, and treatment efforts.

However, systemic biomarkers that can measure exercise effects on brain function and that link to relevant metabolic responses are lacking. 

To address this issue scientists tested the hypotheses that three specific biomarkers, which are implicated in learning and memory, would increase in older adults following exercise training and correlate with cognition and metabolomics markers of brain health.

They examined myokine Cathepsin B (CTSB), brain derived neurotrophic factor (BDNF), and klotho, as well as metabolomics, which have become increasingly utilised to understand biochemical pathways that may be affected by AD. 

Researchers performed a metabolomics analysis in blood samples of 23 asymptomatic late middle-aged adults, with familial and genetic risk for AD (mean age 65 years old, 50 percent female) who participated in the “aeRobic Exercise And Cognitive Health (REACH) Pilot Study” (NCT02384993) at the University of Wisconsin.

The participants were divided into two groups: usual physical activity (UPA) and enhanced physical activity (EPA). The EPA group underwent 26 weeks of supervised treadmill training. Blood samples for both groups were taken at baseline and after 26 weeks.

Results of the study, published in the journal Frontiers in Endocrinology, showed that plasma CTSB levels were increased following this 26-week structured aerobic exercise training in older adults at risk for AD.

Verbal learning and memory correlated positively with change in CTSB but was not related to BDNF or klotho.

The present correlation between CTSB and verbal learning and memory suggests that CTSB may be useful as a marker for cognitive changes relevant to hippocampal function after exercise in a population at risk for dementia. 

Plasma BDNF levels decreased in conjunction with metabolomic changes, including reductions in ceramides, sphingo- and phospholipids, as well as changes in gut microbiome metabolites and redox homeostasis.

Indeed, multiple lipid metabolites relevant to AD were modified by exercise in a manner that may be neuroprotective. Serum klotho was unchanged but was associated with cardiorespiratory fitness. 

The study was conducted by Henriette van Praag, from Florida Atlantic University’s Schmidt College of Medicine and Brain Institute and Ozioma Okonkwo, Wisconsin Alzheimer’s Disease Research Center and Department of Medicine at the University of Wisconsin-Madison.

“Our findings position CTSB, BDNF, and klotho as exercise biomarkers for evaluating the effect of lifestyle interventions on brain function,” said van Praag.

“Human studies often utilise expensive and low throughput brain imaging analyses that are not practical for large population-wide studies. Systemic biomarkers that can measure the effect of exercise interventions on Alzheimer’s-related outcomes quickly and at low-cost could be used to inform disease progression and to develop novel therapeutic targets.” 

CTSB, a lysosomal enzyme, is secreted from muscle into circulation after exercise and is associated with memory function and adult hippocampal neurogenesis. Older adults with cognitive impairment have lower serum and brain CTSB levels.

BDNF is a protein that is upregulated in the rodent hippocampus and cortex by running and is important for adult neurogenesis, synaptic plasticity, and memory function. Klotho is a circulating protein that can enhance cognition and synaptic function and is associated with resilience to neurodegenerative disease, possibly by supporting brain structures responsible for memory and learning. 

“The positive association between CTSB and cognition, and the substantial modulation of lipid metabolites implicated in dementia, support the beneficial effects of exercise training on brain function and brain health in asymptomatic individuals at risk for Alzheimer’s disease,” said van Praag.

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