Saints

Live-in care for the Elderly

Live-in care one caregiver is booked daily for a 24-hour period. One caregiver can be booked for a maximum of four to five days per week depending on the location. For the other days, a different caregiver will be booked. In the 24-hour period, a 4-hour break is given to the daytime caregiver. You can decide if you want coverage for these 4 hours or not. For a live-in shift, the caregiver is allowed an 8-hour sleeping break and a sleeping bed must be provided for this caregiver. Live-in care is billed at a flat rate per day and if the 4-hour break coverage is requested then the break is billed at an hourly rate.

Palliative care in Leicester

End of life care includes palliative care. If you have an illness that can’t be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms.

It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a "whole" person.

Palliative care isn’t just for the end of life. You may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition. 

 

Who provides palliative care?

Many healthcare professionals provide palliative care as part of their jobs. An example is the care you get from your GP or community nurses.

Some people need additional specialist palliative care. This may be provided by consultants trained in palliative medicine, specialist palliative care nurses or specialist occupational therapists or physiotherapists.

Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.

Palliative care services may be provided by the NHS, your local council or a charity. 

source: https://www.myhealth.london.nhs.uk/palliative-care

 #SaintsCare #PalliativeCare #CareinLeicester #ElderlyCare #Homecare

The fundamental standards which your care must never fall.CQC

Everybody has the right to expect the following standards:

Person-centred care

Person-centred care

You must have care or treatment that is tailored to you and meets your needs and preferences.


Dignity and respect

Dignity and respect

You must be treated with dignity and respect at all times while you're receiving care and treatment.

This includes making sure:

  • You have privacy when you need and want it.
  • Everybody is treated as equals.
  • You're given any support you need to help you remain independent and involved in your local community.

Consent

Consent

You (or anybody legally acting on your behalf) must give your consent before any care or treatment is given to you.


Safety

Safety

You must not be given unsafe care or treatment or be put at risk of harm that could be avoided.

Providers must assess the risks to your health and safety during any care or treatment and make sure their staff have the qualifications, competence, skills and experience to keep you safe.


Safeguarding from abuse

Safeguarding from abuse

You must not suffer any form of abuse or improper treatment while receiving care.

This includes:

  • Neglect
  • Degrading treatment
  • Unnecessary or disproportionate restraint
  • Inappropriate limits on your freedom.

Food and drink

Food and drink

You must have enough to eat and drink to keep you in good health while you receive care and treatment.


Premises and equipment

Premises and equipment

The places where you receive care and treatment and the equipment used in it must be clean, suitable and looked after properly.

The equipment used in your care and treatment must also be secure and used properly.


Complaints

Complaints

You must be able to complain about your care and treatment.

The provider of your care must have a system in place so they can handle and respond to your complaint. They must investigate it thoroughly and take action if problems are identified.


Good governance

Good governance

The provider of your care must have plans that ensure they can meet these standards.

They must have effective governance and systems to check on the quality and safety of care. These must help the service improve and reduce any risks to your health, safety and welfare.


Staffing

Staffing

The provider of your care must have enough suitably qualified, competent and experienced staff to make sure they can meet these standards.

Their staff must be given the support, training and supervision they need to help them do their job.


Fit and proper staff

Fit and proper staff

The provider of your care must only employ people who can provide care and treatment appropriate to their role. They must have strong recruitment procedures in place and carry out relevant checks such as on applicants' criminal records and work history.


Duty of candour

Duty of candour

The provider of your care must be open and transparent with you about your care and treatment.

Should something go wrong, they must tell you what has happened, provide support and apologise.


Display of ratings

Display of ratings

The provider of your care must display their CQC rating in a place where you can see it. They must also include this information on their website and make our latest report on their service available to you.

source: https://www.cqc.org.uk/what-we-do/how-we-do-our-job/fundamental-standards

#SaintsCare #PalliativeCare #CareinLeicester #ElderlyCare #Homecare

Government announces 200,000 people can choose care with personal health budgets

Wheelchair users, people with mental health needs, learning disabilities, autism and those receiving adult social care, will gain more power to choose the type of care they want, as part of government plans to give up to 200,000 people personal health budgets.

The Department of Health and Social Care has announced it will grant personal health budgets to up to 200,000 people by 2024. More than 40,000 people currently have one.

The personal health budgets are intended to give people greater control over their care with money that supports a person’s identified care needs. This is agreed between the individual and their NHS team or healthcare professional but it is not new money, only a different way of spending it.

The budget can, for example, be spent on specially adapted wheelchairs, a choice of personal assistants who can be trained, technology and assistance dogs to reduce reliance on a carer.

Care minister Caroline Dinenage said: “I’ve seen first-hand how personal health budgets can give people a new lease of life, granting them the ability to enjoy their lives to the full.

“These budgets help to join up health and social care services, improving people’s experiences and outcomes whilst ensuring value for money for taxpayers.”

The minister added: “We are therefore extending access so many more people can benefit, a key part of our NHS Long Term Plan which will see personalised care become the norm for millions more.”

Increasing access to personal health budgets is part of the NHS Long Term Plan, which aims to extend personalised care to 2.5 million people by 2024.

The government’s announcement follows a consultation on extending the right to a personal health budget last year, launched by the Department and NHS England, in which nine out of 10 respondents backed the proposals.

 

Budgets meaningless unless ‘properly costed’

Many in the care sector have been urging the government to ditch its one-size-fits-all approach, in favour of more tailored care. However, the announcement has been cautiously welcomed by some in the sector who argue the government must put its money where its mouth is.

Care England, which represents independent care providers, tweeted: ’This should go some way to help people make informed choices”.

Tweet by Care England

Care England also tweeted: ‘If personal budgets are to be meaningful they have to be properly costed and not used as an excuse to reduce expenditure’.

The fear that the budgets could be used as a way to cut the government’s costs is backed up by individual cases highlighting the savings made.

The Department for Health and Social Care has revealed a personal health budget for pensioner Malcolm Royle who lived with dementia, actually saved the NHS more than £200,000, over the last three years of his life.

Malcolm Royle was diagnosed with frontotemporal dementia shortly after retiring. His personal health budget allowed his family to buy the support to let him live at home.

The budget meant more flexibility in the hours Malcolm received support and allowed him to be accompanied by his carer to football matches. The only option previously available was a day centre with hours that did not give Malcolm the flexibility he needed.

Over the next few years, Malcolm’s medication reduced by two-thirds and he had only one dementia-related hospital admission, after previously spending over six months in hospital. He died aged 70.

Colin Royle, Malcolm’s son and carer said: “Malcolm’s freedom and independence gave him a new lease of life and, by empowering him to live in the community, he lived for six years, when the doctors had given him six months.”

source: https://www.homecare.co.uk/news/article.cfm/id/1606152/Government-vows-200000-people-can-decide-care-with-personal-health-budgets

Landmark cannabis-based medicine trial targets dementia residents

 

The first cannabis-based medicine licensed in the UK is being trialled for the treatment of dementia symptoms - recruiting care home residents between 55 and 90 years-old who are displaying symptoms of agitation or aggression.  

Savitex is currently licensed in the UK solely for the treatment of Multiple Sclerosis (MS), but Alzheimer’s Research UK say the new trial is significant as there have been “no new dementia treatments in over 15 years”.

‘No new dementia treatments in over 15 years’

The Sativex for the Treatment of AgitatioN in Dementia (STAND trial) will see Sativex peppermint-flavoured mouth spray tested in a Phase 2 clinical trial by Kings College London with funding by Alzheimer’s Research UK to the sum of £300,000.

But whilst the charity is keen to explore the possibilities of cannabis-based treatments, especially for challenging behaviours, they remain open-minded about the results, acknowledging taking cannabis “can involve risks including short-term memory and thinking problems, coordination difficulties and anxiety.”

The trial is significant to those within the dementia community as nearly half of the 850,000 people living with dementia in the UK will experience symptoms of agitation or aggression, according to Alzheimer’s Research UK.

For relatives and care workers, this can often be one of the most challenging aspects of the illness, both for the person with dementia and those caring for them.

A future alternative to antipsychotic medications?

Professor Dag Aarsland, the lead researcher on the STAND trial, said: “While people most often associate Alzheimer’s disease with memory problems, this is just one aspect of a complex condition that can affect people in different ways.

“Many people with Alzheimer’s can become agitated or aggressive, and this can pose difficulties for the person with the condition and those closest to them.

“Current treatments for behavioural and psychiatric symptoms of dementia are very limited, and we desperately need to develop alternatives. Doctors sometimes prescribe anti-psychotic medications, and while these drugs can have important benefits, these need to be weighed against the risk of very serious side effects.”

The STAND trial volunteers will take the medication for four weeks and researchers will compare the results from those taking Sativex and those taking a dummy drug.

Professor Aarsland believes there are some important factors to consider with the STAND trial. He said: “One of the key questions the STAND trial will answer is whether it is practical to give someone with dementia a drug through a mouth spray when they may be exhibiting severe symptoms of agitation and aggression."

There are 60 participants in the trial, but a larger study will take place if results are successful.

‘No good evidence’ cannabis use benefits people with dementia in ‘uncontrolled settings’

Dr David Reynolds, chief scientific officer of Alzheimer’s Research UK, said: “With no new dementia treatments in over 15 years, it is vital that we test a wide range of approaches to find effective ways to help people living with the condition.

“While a major focus for dementia research is to develop drugs that slow or stop the progression of the physical diseases that cause dementia, what really matters is that a medicine benefits people’s day-to-day lives.

“The STAND trial opens the door to a treatment that may help to alleviate an extremely challenging set of symptoms, and Alzheimer’s Research UK is extremely grateful to our supporters for making this important work possible.”

Dr Reynolds has, however, stated how important it is that the trial is conducted in a way that puts the safety and wellbeing of participants first. He said: “This is a rigorous clinical trial of a medication that has been carefully prepared, and which will be tested in circumstances where the health and wellbeing of participants can be closely monitored.

“There is no good evidence that using cannabis in an uncontrolled setting could benefit people living with dementia, and we know that the drug can involve risks including short-term memory and thinking problems, coordination difficulties and anxiety.”   

#SaintsCare #PalliativeCare #CareinLeicester #ElderlyCare #Homecare

source: https://www.homecare.co.uk/news/article.cfm/id/1605891/landmark-cannabis-based-medicine-trial-targets-dementia-residents

 

 

Government's care worker recruitment campaign accused of creating 'unrealistic expectations'

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Government's care worker recruitment campaign accused of creating 'unrealistic expectations'

Unrealistic expectations created by the government's care worker recruitment campaign will not help the sector, according to Karolina Gerlich, chief executive of the National Association of Care & Support Workers.

For the past couple of days, I have been asked many times for my opinion on the current Department of Health and Social Care recruitment campaign - and I said that I need to know more about how care workers are responding to it.

The idea of a campaign that brings more people to a critically short-staffed industry is always welcomed, and something that the National Association of Care & Support Workers would want to support. We also are happy to support any campaign that promotes care as a rewarding job, and that recognises the real difference the profession makes to peoples’ lives. At NACAS, we continuously campaign for the increased representation and reputation of care work – with a skilled workforce that is contributing enormously to social care and wider society, like in our #ProfessionalCareWorkersDay celebrations and campaign.

The hashtag #Everydayisdifferent is a great banner under which to show the variety of tasks, skills, people, and jobs that social care involves. People working in social care often speak of their work not as ‘a job’ or a ‘lifestyle’, and make many personal sacrifices to remain in jobs that bring people happiness.

The job is extremely rewarding and fulfilling but also back-breaking and poorly paid

What we also know at NACAS is that people have to come to the industry with realistic expectations of the job. It is a job that is extremely rewarding and fulfilling, but that is also often back-breaking, poorly paid; mentally, emotionally and physically draining, and undertrained.

It is a job in a sector that is desperate for more funding at every level of care provision, as well as better training standards, pay and working conditions, which would show appreciation of the difficulty of the job.

Recruitment is only one of the problems that the sector faces. Social care is an extremely fragmented sector, where from one place to another, training standards and delivery methods or time frames are completely different. In some places, care workers have not had a pay rise for years, and not rewarded with much appreciation either.

The national recruitment campaign is a start, and hopefully a start for changes and improvements in these other areas as well. But the campaign itself seems to lack balance, creating unrealistic expectations about the realities of the job. Many of the comments I have heard from care workers are about the fact that care work is not all about organising skydiving, bird feeding, and going out together.

More effort is needed to improve retention of staff

As things stand, people should be recruited prepared to be on their feet all day, providing personal care, and dealing with challenging and sometimes aggressive behaviours. Efforts should be made to look after current care workers better and improve retention.

Many care workers wish they could organise days out for their clients, but they are simply given no time for it in so many cases. With turnover rates so high in social care already - what are the chances of retaining young people when they applied as the result of a campaign that masks the sometimes brutal reality of working in the sector as it currently stands?

This includes wages: the jobs site that goes with the campaign should also include NMW (National Minimum Wage) jobs on the first and second page - otherwise it gives an impression that the average care worker is paid more than the national average of £7.76 (as per the Care Workers Charity).

Hard work goes hand in hand with elation, and the pride of making people smile, and helping them live fulfilling lives. Care is an extremely valuable and important profession that can break your heart and body. The strength of those who do this every day needs to be celebrated, but not sugar-coated.

In short: the campaign is a good start, and will hopefully lead to more conversations about the industry and its needs. But in itself, it will not fix the sector - which is at the breaking point. There is much work to be done to change policy and social perspectives towards the conditions care workers deserve, and this campaign is only a drop in the ocean towards making these changes a reality.

To find out more about the government's care worker recruitment campaign click here

Source: https://www.homecare.co.uk/news/article.cfm/id/1605819/government-care-worker-recruitment-campaign-criticized

Home Calls

Home care is care that allows a person with special needs stay in their home. It might be for people who are getting older, are chronically ill, recovering from surgery, or disabled. Home care services include. Personal care, such as help with bathing, washing your hair, or getting dressed, getting in and out of bed, prompt medication, making cup of tea, prompting SU to eat, help with cooking or preparing a meal, companionship.

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GPs to offer targeted support to frail patients to prevent admissions

GPs will work with community services to identify moderate frailty and enable earlier detection of conditions such as dementia, according to NHS England’s new long-term plan. 

NHS England said that, based on their individual needs and choices, people identified as having the greatest risks and needs will be offered targeted support for both their physical and mental health needs, which will include musculoskeletal conditions, cardiovascular disease, dementia and frailty.

As previously reported, the plan will see GP practices mandated to join networks of 30-50,000 patients, which will be aligned with community multidisciplinary teams.

The document said: 'Extending independence as we age requires a targeted and personalised approach, enabled by digital health records and shared health management tools.

                       

'Primary care networks will from 2020/21 assess their local population by risk of unwarranted health outcomes and, working with local community services, make support available to people where it is most needed.'

The plan noted that GPs are already using the Electronic Frailty Index to routinely identify people living with severe frailty and said that the connecting of home-based and wearable monitoring equipment will increasingly enable the NHS to predict and prevent events that would otherwise have led to a hospital admission.

These include a location tracker for people with dementia, and home testing equipment for patients taking blood-thinning drugs.

The plan also outlined how new acute frailty services will help cut avoidable emergency hospital admissions.

   

The document said: 'Hospitals will also reduce avoidable admissions through the establishment of acute frailty services, so that such patients can be assessed, treated and supported by skilled multidisciplinary teams delivering comprehensive geriatric assessments in A&E and acute receiving units.'

NHS England said that the model should be embedded in every hospital during 2019/20.

GPs have been urged to assess frailty when creating care plans for older patients, with new guidelines issued in May last year warning that patients with type 2 diabetes, need to have frailty assessed as a priority when having individual care plans created for them.  

#SaintsCare #PalliativeCare #CareinLeicester #ElderlyCare #Homecare

 

Souce: http://www.pulsetoday.co.uk/news/commissioning/commissioning-topics/urgent-care/gps-to-offer-targeted-support-to-frail-patients-to-prevent-admissions/20038069.article

Out of sight, out of mind: I despair at how we treat our elderly

We go about our own lives as if ageing will never happen to us, but older people are a reminder that it will  

While we waste precious column inches and TV air time on a useless debate about who is worse today, the baby boomer or the millennial generations, the brave generation before the boomers languish in aged care beds, rotting, disintegrating, becoming invisible as the idea of ageing appears to offend us.

There are older people forced into selling their homes for a much in demand aged care bed because there are no family members willing or able to care for them, more often than not the elderly do not wish to be a burden on their families. The fact that they even feel this way is a cultural black mark against our western civilisation. Our oldest culture respects their elders, takes advice from them and in many cases they are regarded as leaders of their people.

Paying to buy a bed in a private nursing home that makes promises to care for them as they would their own family members is a deception that many elderly fall victim to. Shiny entries are all clean and smelling fresh, a few happy nursing home residents are rolled out and potential newbies are shown only select areas while the horrible truth of inadequate staff and facilities are hidden out of sight by profiteers and their agents of gloom.  

My dad is 84, he is currently independent and healthy, living in his own home downstairs in a self contained flat we built from his garage. It is large, clean, sunny, airy, spacious, with a bedroom, a bathroom and it is also a safe aged care space as he continues to get a bit less mobile and a bit shuffly. We relocated from Canberra two years ago when I realised my mother was unwell, she and my dad were not coping at all. Sadly mum lived for only six months after we moved here, she had a fall and broke her hip, we got her home for a few weeks but she deteriorated rapidly. Death did not come gently to her. Dad was shocked to find himself alone and grief stricken over the woman he had shared his life with for nearly 60 years

Dad was never a cook and cleaner as mum did all that type of work, he is a stout Irishman, we immigrated here in 1964. He worked two jobs, one tapping beers in a cellar at night after working seven hours labouring outside installing gas lines or building roads. When I was about seven or eight mum got a job as a barmaid and then later worked for a health fund for many years, she loved working but then she also had two jobs, the one at home and the one she caught the bus, then train to and from every weekday. They were amazing parents in tough times. I am repaying my debt to them for their devotion to me.

I was initially oblivious to my mother’s deterioration, a busy life in Canberra working at Parliament House in my own bubble, my daughter my priority as she hit eighteen and became problematic. My current husband was busy with a demanding job. All of this and I neglected two of the most important people I have been privileged to have in my life, my parents. I spoke to mum often, sent her flowers and little cards. I suspect these were my guilt gifts.  

After Labor lost government and I lost my job, my husband and I decided to take a four month sabbatical and take our caravan from Canberra to Cairns and back. It was magical until we called into my parents home to stay for a few days before heading back to Canberra. The shock hit my like a boulder falling on my head from above. My mother frail, a little dishevelled, shuffling abut the house trying to pretend that all was well. My dad looking a bit haunted and very stressed, he too was not the robust father I saw last time. How had it happened? It seemed so quick, but it was not quick, only my life had passed quickly and I had rarely seen them in three years.  

This is how I came to look after my dad and more importantly how aged care has become a passion.

We would not leave our children alone in a place foreign to them, with untrained and seemingly uncaring staff to supervise them, yet we do this to the many people who have nurtured us, made massive contributions to the country we live in and paid taxes. Many of those elderly people in nursing homes never thought that the houses they had hoped to leave for their children would have to be sold to provide their ongoing care.

What would you do if you came to visit your child in hospital and found them laying in their own faeces with the most unappetising food congealed on a plate next to them, because nobody had time to feed it to them? Would you say anything to the staff if you noticed bruises or bumps, blood stained clothing on any of the patients not just your own child? How is it that we can treat our elderly as discarded pieces of furniture that are worn out and faded? Why do we allow them to become invisible rather than embrace their knowledge, listen to how they lived, how they enjoyed or toiled? We know the conditions are appalling for aged care staff, it does not mean we should accept this as a given.

We go about our own lives as if it will never happen to us, but older people are a reminder that it will happen and it will come upon us just as quickly. We will live longer and with more chronic illnesses, so the chance of being exiled into a nursing home for even longer periods is even greater.

Woken at 6am for a cup of tea if you’re lucky, less lucky if you are a coffee drinker and love to stay in bed until later. Covers pulled back exposing your old bones to a chilly morning or to freezing air conditioning, escorted to a cold bathroom or hefted bodily into a commode chair, then showered quickly, rarely dried off entirely and clothes thrown on if you are unable to dress yourself. If you are relatively good at managing your hygiene, expect to be left alone in the bathroom and told to stay there till someone comes to get you, it can be a long lonely wait in a cold bathroom. Then not back to your warm bed where it is quiet and you can go back to sleep, no, placed in a chair a large lounge area, with a TV blaring and others around you strapped in to their chairs with a sheet or perhaps at a table with a bib on awaiting breakfast, not due for another hour yet. It is now only 8am, the whole day awaits you in this cold, sad lonely nursing home, with only memories if you still have them to keep you entertained. Most of the residents just sleep what is left of their lives as it ebbs away.

I have painted the most dastardly picture as it is the one I am most familiar with, I trained as an aged care nurse, starting aged fifteen, over 40 years ago. There are some good nursing homes, some are well staffed and have nurses who know how to care for skin, to prevent bed sores, to dress wounds and listen to stories. These type of homes are the hugely expensive ones. Sadly many of our residential care homes are poorly staffed, have a lack of facilities, a lack of proper nutrition and are poorly cleaned. Food is provided through a private service, often as cheaply as possible and in small portions.  

I work part time in an electorate office in a low to middle socio economic regional area, the constituents that come to see us have issues with Centrelink, the NDIS, NBN and telcos, aged care or even child support issues. We rarely have people come to see our MP about politics or policies, or even local issues.

Last month a lady came in to the office, she had a soft voice, a tiny little woman, aged around sixty, I will call her Carol. She told me the nice man at Centrelink sent her to us to help. It was during the interview about her Centrelink situation Carol told me about her mother who was in hospital in intensive care, not expected to live for much longer due, allegedly to a lack of care at her nursing home. Her mum is a paraplegic after a stroke and could no longer be cared for at home, so the kids sold the family home to pay for a bed at the local nursing home, a reputable one by all accounts.  

Carol’s mother was in hospital due to infected burns, not from a heater or a fire, but from her own urine and faeces. Left in a nappy for hours and with a urinary tract infection, her urine burned her crepe paper like skin which immediately became infected. The lesions on her skin went untreated for days until she fell our of bed and was found unconscious. The hospital called to advise Carol her mother was seriously ill in hospital, not the nursing home.

We must do better, we must protest, we must fight for the rights of those elderly who can no longer fight for themselves. Refugees are important, veterans are important, abused children and battered women are important. Many of those have advocate groups, lobbyists, voices to speak for them. Who is screaming for our elderly parents and grandparents, our aunts, uncles, friends, as the ones who still have their minds in tact are left screaming inside for some vestige of respect and humanity?  

I will care for my dad until he passes, if it becomes too hard because he gets too ill then I will employ nurses to help me, this cannot be everyone’s choice for many reasons I know that, but house sharing is an option.

In the end it is us, the families that must take responsibility for those who took care of us. If we have folk in homes we must visit regularly, participate in their care, provide food, even washing clothes. This will keep the residential care operators on notice, we must call out anything we see, we must be brave and form little communities within these care homes, so we can keep an eye on each other’s relatives too. Let’s encourage local primary school groups to adopt a granny or grandad, perhaps visiting once a week or even once a month. Not all older folk have families and they too must have appropriate care. Each aged care facility could be a training opportunity for local Tafes once restored, dietitians, assistant nurses, assistant chiropodists, hairdressers, barbers and so on. It can be limitless with the right leaders and the right vision.

We must take time out for elder care the same way we do for childcare.

  • Maree Duffy-Moon is a semi-retired left leaning ALP member and a carer  

Source: https://www.theguardian.com/global/commentisfree/2019/jan/06/out-of-sight-out-of-mind-i-despair-at-how-we-treat-our-elderly

 

#SaintsCare #PalliativeCare #CareinLeicester #ElderlyCare #Homecare

Dementia projects to improve peer support, prevention and end-of-life care

Dementia research teams at UCL have been awarded more than £11 million for projects seeking to create an online support network, improve end of life care, and learn more about how lifestyle change can prevent dementia.

The projects are part of an Economic and Social Research Council (ESRC) announcement of £15 million of funding in collaboration with the National Institute for Health Research (NIHR) for the ESRC-NIHR Dementia Research Initiative 2018. The initiative has funded four projects, three of which are based at UCL and another at the University of Sussex, that will run for five years and start in January 2019.

There are 850,000 people with dementia in the UK, with numbers set to rise to over one million by 2025. An estimated 670,000 people in the UK are acting as primary carers for people with dementia.

One UCL project will develop and evaluate a multicomponent support group for people with young onset and rare dementias, such as frontotemporal dementia or posterior cortical atrophy, which together affect between 5% and 15% of people living with dementia. Many people affected by these types of dementias are not able to meet others in a similar situation for practical and emotional support because there aren’t people with the same type of dementia living locally.

Working with people living with dementia, Professor Sebastian Crutch (UCL Queen Square Institute of Neurology) and his team will develop an online support group that can be accessed anywhere. The project builds on face-to-face support group meetings that the research group runs around the country.

Professor Crutch said: “We’re thrilled that the ESRC-NIHR have agreed to fund this work looking at the value of support groups by, with and for people with young onset and rare dementias. The support groups grew initially out of our local London clinic, but we have a vision that everyone living with, or at risk of living with, a rare form of dementia has access to specialist information, support and contact with others affected by similar conditions.”

Another project team is studying how lifestyle change can prevent dementia, led by Professor Claudia Cooper (UCL Psychiatry) alongside international and national experts, Public Health England, NHS, Age UK and the Alzheimer’s Society. The team will target the key dementia risk factors: diabetes and cardiovascular risks, physical inactivity, social isolation, mental illness, alcohol and smoking.

Professor Cooper said: “A third of cases of dementia are potentially preventable and lifestyle changes have slowed cognitive decline in other research studies. Our focus is how these benefits can reach many older people, not just healthy, early adopters who usually take part in research trials.  We want to include older people from more deprived and minority ethnic communities who have a higher risk of dementia.”

In 2020, Professor Cooper and her team will work alongside colleagues in UCL Engineering, led by Professor Miguel Rio, to challenge engineering students to design new technology to help people make the lifestyle changes that reduce dementia risk.

For the third UCL project, researchers at the Marie Curie Palliative Care Research Department, UCL alongside colleagues at Kings College London, will co-design and pilot a new model of palliative care for dementia, to ensure that people at the end of their lives receive the right care at the right time in the right place.

The researchers seek to understand current and future need for dementia palliative care and how people with dementia move through the health and social care system. They will develop new models of palliative dementia care that can be delivered by mainstream services, where people with dementia live and receive care.

Dr Liz Sampson (Marie Curie Palliative Care Research Department, UCL), who is leading the project, said: “This is a hugely under-researched area. We know, given the increasing numbers of people who will die with dementia, we have to find better ways to deliver person-centred care that will improve comfort and quality of life towards the end of life. This programme includes innovative studies involving under-represented groups such as those with rapidly progressive and young onset dementias, working across UCL with the MRC Prion Unit and the Dementia Research Centre at the Institute of Neurology.”

Professor Jennifer Rubin, ESRC Executive Chair, said: “I am very pleased that ESRC is collaborating again with the NIHR to fund research that will make a real difference to the lives of people living with dementia and their carers. The four funded projects will be national and international focal points for social science research in the field of dementia and will deliver UK-wide benefits for people living at different stages of dementia and with both the more common and rarer types of dementias.”

Minister for Care Caroline Dinenage MP said: “To make this the best country in the world to live with dementia, it’s crucial we are at the forefront of cutting edge dementia research like this, improving how we support people living with dementia to enjoy the best quality of life possible.”

 

source: https://www.ucl.ac.uk/news/2019/jan/dementia-projects-improve-peer-support-prevention-and-end-life-care

 

 

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