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TOPIC: Dementia are we making progress or is it old news?

Dementia are we making progress or is it old news? 1 month ago #1

Improving diagnosis rates is a key part of the Prime Minister's Dementia Challenge We are told a new campaign aimed at raising awareness of the early signs and symptoms of dementia, and encouraging people to see their GP at an early stage, is planned for 2012-2013.
But with 800,000 people with dementia in the UK and 17,000 under the age of 65 and numbers projected to rise to over 1 million by 2021 and 1.7 million by 2050 what do members of the forum believe are the most important issues?

Re: Dementia are we making progress or is it old news? 1 month ago #2

“Two sets of people are central to increasing awareness and therefore early contact and the potential for diagnosis.”

“The first of these groups are professionals in health service at every level, including A&E departments, and in adult and caring services.”

“The second are family members, and therefore reaching those who are having day-to-day contact with potential dementia sufferers. Reassurance as well as signposting to the right gateways through to memory clinics is important. It is as critical to be able to ascertain that someone has reasonably normal memory loss as it is to ensure early diagnosis and therefore the possibility of remedial treatment, proscribing and of course support to the carers.”

Re: Dementia are we making progress or is it old news? 1 month ago #3

Dementia is a huge challenge to society and individuals – the economic burden to the UK already stands at a crippling £23bn a year, and as the numbers of people affected soar, the challenge will only increase. Research has the potential to deliver new, effective treatments that could have a huge impact on people’s lives and avert a looming crisis. That research takes money and cutting-edge resources, but if we fail to invest in it now, we will face an even greater economic challenge in the long-run.

UK scientists are well-equipped to tackle this challenge, as global leaders in the dementia research field. Research is making progress, with a better understanding of the causes of dementia and advances towards earlier and more accurate detection. But despite recent increases, funding for dementia research lags far behind other serious diseases – for every scientist working on dementia, six work on cancer. Although the outlook is improving, we still need a serious boost to the research effort if we are to match the progress that has been made with other diseases. Without it, we risk failing the hundreds of thousands of people living with the condition.

Re: Dementia are we making progress or is it old news? 1 month ago #4

‘It’s great to see the Prime Minister recognising the impact of dementia, there are many new commitments made in the Prime Minister’s challenge that will make a significant difference to people with dementia.

We also need commitment to providing the best support for people with dementia. It’s vital that we work towards ensuring early diagnosis is the norm, so that people can access treatments and help early on. Once someone has been diagnosed with dementia, they should be confident they will have access to good quality care.

Everyone can play their part in making our communities more dementia friendly. We urge all people from the boardroom to bus drivers to respond to the dementia challenge, working together to raise awareness and create dementia friendly communities.

Imagine a community where staff in the local hairdressers, supermarkets and banks were trained, able and willing to help people with dementia if they became confused or needed support.

Three quarters of people think the UK isn’t geared up to deal with dementia. One in three people over 65 die with dementia and it touches every aspect of our community. We can no longer afford to ignore how the condition will affect us all.’

Andrew Chidgey
Director of External Affairs
Alzheimer's Society

Re: Dementia are we making progress or is it old news? 1 month ago #5

As the Safeguarding Adults Lead for my organisation Central London Community Healthcare NHS Trust, I have been teaching dementia awareness to all our staff and member of the public and ensuring that the aims to raise awareness as set in the National Dementia Strategy, such as having early diagnosis in Primary care by giving more power to GPs to give diagnosis etc. and the set up of memory clinic.

My concerns with GP giving diagnosis of dementia is:
• What would GP do with this information? if the person who is newly diagnosed with dementia require acetyl cholinesterase inhibitors to manage their cognitive impairment. As GPs cannot initiate this medication, except a Consultant Psychiatrist, Neurologist or Geriatrician.
• will it be a work repetition?
• what further training should GP have in order to give such diagnosis, they are General Practitioners and not Specialist in for example Psychiatry. and my last concern is:
• Given that GPs can see a patient for 10 minutes, how could they ensure they can have a thorough assessment to give a diagnosis of dementia.

I have to say that I was shocked to hear on the BBC news on Tuesday 3rd July early morning, that it takes at least a year for people who have been seen to be diagnosed. It is absolutely shocking as this clearly contradicts the National Dementia Strategy and what I have been teaching to staff, colleagues and members of the public.

Re: Dementia are we making progress or is it old news? 1 month ago #6

Michelle Mitchell, Charity Director General of Age UK said, "More than 820,000 people in the UK have dementia. By 2025 that number’s set to rise to one million. Many of those with the condition are trying to lead normal lives; going to the supermarket or corner shop, taking buses and trains. Yet very few people other than relatives and friends of people with dementia understand the impact of the condition or know how to respond to someone with dementia who might be distressed or confused.
Only five percent of hospitals make sure all of their staff are trained to work with dementia patients. Outside the NHS the number is likely to be even smaller . Yet, as the recent public debate over the handcuffing of an 84 year old man with dementia shows, it’s important that our policemen and other public servants as well as those working in the private sector who regularly deal with the public from shop assistants to bus drivers have basic skills and awareness s of a condition which is becoming an increasingly common feature of life in the UK.

Re: Dementia are we making progress or is it old news? 1 month ago #7

My top five priorities on tackling dementia are:

1) Public Awareness
2) Tackling Stigma
3) Early Diagnosis
4) Looking after carers
5) Proper community support

The over-riding message I would like to get across is that if you do have Alzheimer’s or Dementia then you can live well with the right support

Re: Dementia are we making progress or is it old news? 1 month ago #8

Improving dementia diagnosis is essential if we are going to properly tackle the condition. While it is estimated that the number of people with dementia in the UK will rise by 20% to over a million within the next decade, around 60% of people with dementia will die because of it never having been diagnosed. If the same figure was true of cancer, improving the diagnosis rate would rightly be a national priority. An early diagnosis of dementia can help those with the condition live well for many years and means that patients and their families can have time to plan for their future care and treatment with specialists.

This week, the All Party Parliamentary Group on Dementia released Unlocking Diagnosis, its report on improving diagnosis rates and, as Vice-Chair of the Group, I was delighted to see the enthusiastic response to the report’s inquiry from over a thousand patients, carers, specialists and clinicians. The report’s conclusions included the recommendation that more money must be invested in a sustained public dementia awareness campaign. At present, many people who exhibit symptoms dementia often fail to take their concerns to their GP because they are scared of being diagnosed with the condition. In part, this is due to a lack of knowledge – most people’s exposure of dementia is from television portrayals which almost always depict characters in the advanced stages of the condition, when their quality of life is poor. I believe that the investment in a public awareness campaign is essential to show people that they can live well with a good quality of life for many years whilst having dementia if they see their GP early enough.

If any campaign is successful in getting more patients to present their concerns to their doctor however, it is essential that GPs have the proper training to diagnose dementia. It is clear that many clinicians at present are unable to diagnose the condition – often misdiagnosing it as depression – meaning that the benefits of early diagnosis are missed. In part, this is because many doctors were trained before dementia was properly recognised and so I believe that we must introduce refresher training in the condition for doctors while ensuring there is a greater focus on it at medical school for trainees.

Alongside the launch of the Prime Minister’s Challenge on Dementia earlier in the year, the release of the APPG’s report represents a growing recognition that the current level of dementia diagnosis is unsustainable and unacceptable. It is clear that increased awareness of the condition among clinicians and the public in general is essential if we are going to end the tragedy of people dying from dementia without ever being diagnosed.
Last Edit: 1 month ago by Scott Buckler.

Re: Dementia are we making progress or is it old news? 1 month ago #9

The leadership group at LINk Southwark has put the monitoring of elderly care as one of our key priorities for 2012/13. This includes monitoring of care homes, sheltered accommodation and domiciliary care as well as the provision of day centres within the borough.

In regard to dementia, information for the relatives is key so that they can ensure that the care being received by the deteriorating relative is of a good standard and appropriate for the individual. Hospitals are usually not the best place for anyone with dementia as it seems to hasten the condition. Hospital stays should be kept as short as possible so that elderly people can get back to familiar surroundings as soon as possible.

It is important that each person is treated as an individual and that their needs are assessed regularly. They need to be placed in the most appropriate setting so that a person is not placed in a unit where other residents have much more advance dementia. A good, specialist nursing or care home has a much higher level of understanding about dementia than the average hospital ward. The staff have more training and the residents have a chance to settle down into a familiar routine. The problem is that, if an elderly person really can't return home after hospital admission, it takes time to find suitable bed in a care home and get them out of hospital.

Within our mental health task group we are reviewing and responding to the current key issues within Southwark such as the impact of service closures and disinvestment at SLaM and are preparing for an enter and view for SLaM’s Older Adult Ward.

Re: Dementia are we making progress or is it old news? 1 month ago #10

I am glad that GP's will now take more seriously the early diagnosis of persons presenting with a possible cognitive impairment.
Early diagnosis has been the mantra of the mental health services for many year's.
The issue is training GP's to diagnose sufficiently.
Follow up should be early referral to specialist services with memory clinic's.
As we move forward with the ever decreasing budgets and specialist nurses losing posts it will be a difficult few years ahead.
Concern for the community support and training of families and the respite from caring will be the major challenge in the next decade as resources shrink.
Were will GP's see that ongoing support is needed?
Only I believe through a system wide support, to the person diagnosed and also family members who will need to be sustained whilst dealing with this long term condition.
If GP's want to be better enabled to support this group of individuals they need to commit to it in the same way as cancer services in the past .
Cast a light for families and careers' who will be the main stay of this group not the statutory or non stat services.
The challenge is huge, prescribing is the least of the challenge but the reality is that with the support of good diagnosis and treatment the person diagnosed properly will have a better quality of life.
It is also pertinent to have wrap round services to support the person with the diagnosis. Which GP's will have to agree to fund!

Re: Dementia are we making progress or is it old news? 3 weeks, 6 days ago #11

I feel it is very important that more can be done to improve care of people with dementia, in all environments from people's homes, supported living, care homes and different wards and units within hospitals.
Although for some, this may seem like old news, there are many people who are new or unaware of the challenges faced by people with dementia and may not be sure of how to help. Further awareness raising is always a good step in the right direction and will improve future progress.

Training, education and support must be given on different levels, to health, social and community care workers, to family and friends, and to other helpers to support people with dementia.
These should be delivered in a way which is accessible to those learning and developing, with evidenced based resources and practical support readily accessible when and where it is required. Also summary information sheets would be useful to remind people of the key points.

The environment of where a person is cared for must be taken into consideration, as people who are unwell can become confused and disorientated, both with or without dementia.
Good assessments skills, identification of appropriate support and risks, and individualising care for each person should be delivered. Ideally standardised care plans and protocols should be used so that the focus of care-givers can be on the person receiving support rather than on the processes itself. It can be very difficult to identify dementia in very unwell patients as symptoms often overlap. However in delivering excellent standards of care and support for people with dementia it would also raise standards for care and support for people without dementia.

By revisiting and further reinforcing of awareness on supporting people with dementia, more people would be able to learn to work together, across disciplines and settings. We can then feel more confident and competent in providing the levels of care we would like to deliver and also be able to support less experienced colleagues and friends. Sometimes we find ourselves in very busy and challenging situations, and this is where greater levels of mutual understanding and support would really help everyone.
Posted on behalf of a NHS

Re: Dementia are we making progress or is it old news? 3 weeks, 6 days ago #12

Can I add to the dementia topic, that as a staff nurse on the ward, education and training is vital within healthcare services and as an update we were given a print off from the Alzheimers's Society website on " What is Dementia?". Does anyone feel that more needs to be done in the education of dementia, not just a printout.

Re: Dementia are we making progress or is it old news? 3 weeks, 6 days ago #13

I am a Dementia Care Programme Manager (commissioner) for both the NHS and council in Walsall, West Midlands and it is great to see a constructive debate on dementia and the many challenges we all face. I say all because as dementia does not discriminate, it is in all our interests to get this right. Part of my role involves speaking to all kinds of groups including GPs, councillors, front line staff, voluntary organisations and carers. The first thing I put to a group of people I present to, is the number of the group likely to go on to develop dementia. This invariably gets people’s attention!

I found it very interesting to read everyone’s very thoughtful and well constructed posts. I can’t say that I would disagree with anyone and this just illustrates not only the variety of strategies we can employ but the challenge to getting the message over… BUT all the help and support can only start once there is a referral for a diagnosis.

In Walsall, we have a history of a poor rate of diagnosis of the prevalence. Therefore, we have a particularly big challenge and one which we have had to really think about.

One of the things I am keen that we learn from, is that in my experience of 20+ years as a community nurse assessing people with a likely dementia, was that people referred nearly always fell into two camps: half of those people were concerned they had cancer and had worried but not raised it with their GP and the other half believed they were going senile and once the ‘authorities’ discovered their secret, ‘we’ would put them into a home. With this in mind, we have tried to address awareness and information about dementia, reducing stigma and encouraging people to visit their GP to find out what the cause of their concern is. We have done this by developing dementia training for all (still on-going) and a booklet titled, “Are you worried about your Memory?”. We have translated this into five South Asian languages and six recorded podcasts so we can put the information onto the Internet and take it into communities on CDs or as MP3 audio files for groups to use. People need to recognise the signs in themselves. The booklet also explains some of the reversible cause of memory problems and that there is some form of treatment whatever the cause is. To support these documents, we link to videos in several languages via our website.

It was pointed out in another post, that GPs who have only 10 minutes for a consultation easily miss the early signs of dementia. Where people are articulate, this is more of an issue. Furthermore many of the paper screening tools we have traditionally used do not pick up people with Mild Cognitive Impairment (memory problems but not dementia) and those in the early stages of the disease. For people whose first language is not English or those who have difficulty with reading and writing, this is also an issue together with the fact that these ‘tests’ are subjectively scored. With this in mind, we are carrying out a trial of a Class II Medical Device called CANTABmobile, which uses an app on an iPad to carry out the screening for dementia – they of course still need to have the blood tests and examination. There is no reading and writing involved, many languages are built in, it is not subjectively scored and the app screens for depression and asks about problems with activities of daily living. We are using this in nine GP surgeries, the acute hospital and Parkinson’s disease nurse specialists.

The acute trust (hospital & community) has a new integrated dementia pathway and we have commissioned two Dementia Support Workers provided by AGE UK to encourage the dementia culture change within the hospital. The pathway helps staff to identify as yet undiagnosed people and improves the experience and outcome of those already diagnosed.

I couldn’t agree more with the comments about training and feel this should always be face to face. DVDs and paper may be better than nothing but why should we settle for second best? I do not know of a training DVD which can answer questions and there are always questions!

We have several other support services for when people are diagnosed and a tender out for a service to target hard to reach groups with dementia awareness and healthy lifestyles but that is another story.

Re: Dementia are we making progress or is it old news? 2 weeks, 6 days ago #14

The first key issue is around ensuring that people receive a diagnosis. Too many people are not diagnosed, due to reluctance from GP's to make a diagnosis if there is likely to be stigma within the community/family and if there is a perception that there are no follow up support services available. Even when people come forward with concerns about their memory getting a diagnosis can take too long.

The second key issue is about providing appropriate information and support after the diagnosis to ensure that the person with dementia can live well with dementia for as long as possible. By providing ongoing support crisis situations could be averted which are costly and traumatic for the person with dementia and their families.

The final key issue for me is how to ensure high quality support when a person with dementia requires care in a care home or hospital setting. There appears to be a huge gap in the knowledge and skill set of many practitioners who have not received dementia specific education yet are faced with dealing with the challenges of caring for this particular group of people.

Dementia friendly communities (highlighted by the Prime Minister in his dementia challenge document) offer one way forward to ensure that people with dementia are integrated within their communities and enabled to live well for longer at home.

Re: Dementia are we making progress or is it old news? 2 weeks, 6 days ago #15

In a recent qualitative multi-centre study funded by the NIHR SDO undertaken by The University of Newcastle, The University of Manchester and Kings College London called 'The Transitions Study' we found that there wasn't enough support for people undergoing assessment for memory problems (herts.academia.edu/ClaireGoodman/Papers/..._peoples_experiences)

A diagnosis of dementia should be part of a process not a one off event. There was the need for more support and information throughout the assessment process. In our study participants expected some kind of clarity through receiving a diagnosis but this was not the case for most people and fears about the future continued. Also participants did not expect to be diagnosed without support or treatment which was often the case for those diagnosed with a vascular dementia. Therefore a push for early diagnosis must also include providing the resources necessary to help families cope and manage that diagnosis - there needs to be support provided at each point of transition through a person's ongoing journey with dementia.

I also hope that there can be much more funding and resources directed to supporting those living their everyday lives with the condition. For example more recent research that I am involved with is exploring the role that appearance plays in the lives of people with dementia looking in particular at the work of hairdressing services within care settings (www.thehairandcareproject.com). These services often work on the periphery of care but are engaged in activities that are in opposition to the notion of decline and neglect. Hairdressers offer a service which seeks to provide a sense of well-being and dignity in the lives of people with dementia. There are also many sensory opportunities to connect with people with dementia through the touch and sensation of this kind of work. We need to be more imaginative and creative in the support that we are giving to people already living with dementia in care settings and the community.
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