Researching dementia

Last week statistics were released showing that during the last year 22,000 people took part in dementia research – a 60% rise - and that 10,000 people have signed up to Join Dementia Research.

Research isn’t a topic that I’ve written about extensively, which perhaps isn’t surprising given that I’m not a scientist or an academic. That doesn’t mean I have no interest in it, however. Aside from the very obvious personal feeling I have that I don’t want others to go through what my dad went through (particularly in the latter years of his dementia), I am an ambassador for dementia research charity BRACE, whose work I am constantly in awe of, and I write and speak extensively about the fact that, in reality, we actually know alarmingly little about dementia. 

This lack of knowledge has many causes, which include the historic lack of focus on dementia, the even greater lack of money put into dementia research in the past, and the sheer complexity that the many forms of dementia present to even the most scientific or academic brain. Studies have started and never produced results, and in terms of pharmaceuticals, drug trials have been abandoned due to unforeseen circumstances – for example drugs not producing the effects expected or unacceptable side-effects.

I have never been a person greatly influenced by the work of pharmaceuticals, although I do acknowledge that many people are supportive of the current (limited) drugs that are available and of course any new breakthroughs – like for example Eli Lilly’s Solanezumab drug announcement at the recent Alzheimer’s Association International Conference – are of course to be welcomed if indeed there is widespread benefit to be had for people with Alzheimer’s Disease in the future.

This is, however, such a tiny part of the overall picture. With so many different forms of dementia, and different nuances in how each person with a particular form of dementia experiences their symptoms, there is so much more that needs to be determined before we can honestly say that our understanding, and treatment for, the many different types of dementia has progressed to the point that we have reached for the many different types of cancer.

With that in mind, any increase in the numbers of research participants is extremely important, and I suspect is largely down to the profile dementia now has that it simply never had in the past. So what are the benefits of being involved in dementia research?

For people with dementia:

Many people I know who are living with dementia have actively sought to be involved in research. These individuals often describe involvement in research as an opportunity to feel useful, to be proactive after diagnosis and with the potential to make a difference to the lives of others now and in the future.

For families of people living with dementia:

Because a diagnosis of dementia impacts far and wide beyond the person with the diagnosis, many family members feel they want to do something that helps them to contribute to the wider understanding of dementia. Some people also view research as an opportunity broaden their own knowledge.

For society as a whole:

As dementia seeps into the public consciousness like never before, more individuals are learning about dementia and recognising that, as the numbers of people being diagnosed increases they, or someone they love, may also develop dementia in the future. To be able to help improve understanding and treatment is a powerful motivating factor.

So much of research really is about the future, and future-proofing health is often in the forefront of the minds of both researchers and participants, but I would sound a note of caution. While we think about improving health for the future, and ideally finding the treatments and potentially even cures for the different forms of dementia, we must never forget the people who are living with dementia NOW. 

Their needs are as important as our own need to avoid developing dementia in the future, and research into living well, lifestyle strategies, non-pharmacological therapies and care and support that focuses on improving quality of life is what is likely to benefit these individuals the most. I recall when my dad was alive, and particularly in the latter years of his dementia, the headlines about research ‘breakthroughs’ pretty much went over my head. They were utterly irrelevant for dad, who was my primary concern at that time, and although I don’t in any way dismiss genuine breakthroughs now, I have an equally strong sense that helping people in the  future doesn’t mean we neglect those living with dementia in the present.

Research for people living with dementia now, people living with dementia in the future, prevention of dementia and the many different aspects of treatment and care needs to be as broad as the participants signing up to participate in dementia research. That, for me, is the blueprint for a dementia research strategy that is befitting of the task ahead of us, and one that also does justice to the many people, like my dad, who have lived and died with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook  

Join the debate

Back at the start of 2013 I published a blog detailing My Dementia Wish List for the year. Ten months later seems an appropriate time to revisit some of these goals and, looking forward to the G8 Dementia Summit in London in December, explore some of the key issues in the world of dementia right now.

---


CARE


How do we improve care for people with dementia?

By providing care that is person-centred, dignified, respectful, understanding  and compassionate. By offering people with dementia the chance to achieve, promoting their independence, ensuring that we always involve the person and seeing their abilities before their disabilities.

How do we support family carers more?

Listen to carers and find out what they need as individuals. Don’t employ a one-size-fits-all model. Ensure all support is family and relationship centred, and recognise family carers as a vital part of the 'CareForce'.

Do we need more specialised training?

It is vital that we offer high-quality, specialised dementia training to both professionals and family carers alike to engender a new breed of 'CareForce'. With the right training we can empower the people on the frontline of care - in homes, care homes and hospitals - with the skills and understanding that they need to support people with dementia.

Is early diagnosis the key for families facing dementia?

Timely diagnosis (diagnosis that is at the right time for the individual and their family), with good support mechanisms in place to ensure that the person with dementia and their family can ‘Live well with dementia’ is the ideal.

How do we ensure people ‘Live well with dementia’?

By putting the person with dementia and their family at the heart of joined up health and social care. Supporting, caring, loving and living with dementia as a team effort within a dementia friendly community.

How can we learn from best practice in the UK and worldwide?

Research good practice, collate that and share it. Be bold enough to highlight what we do well, and equally speak up when care is not what it should be.

How do we improve end-of-life care for people with dementia?

By looking at what individuals want. Encouraging as much forward planning as possible, and having the care and support in place to ensure that those wishes are met with the utmost dignity and respect.


COMMUNITY AND SOCIETY


How do we make our communities more dementia friendly?

By investing in educational, awareness raising initiatives amongst all age groups, crucially promoting the point that dementia friendly communities are good for everyone. We must build on Dementia Friends and some of the great local projects that are proving very successful and share their best practice. It is also vital to ensure that commitments to being dementia friendly are met by every locality to avoid a postcode lottery.

Can stigma be defeated?

I believe it can. So many other highly stigmatised diseases and conditions have managed to emerge from the shadows. Dementia can be the next one.

How to we increase awareness?

Talk about dementia. Listen to personal experiences. Provide platforms to share. Be open and honest. If everyone touched by dementia made a commitment to speak about it to someone with no knowledge, awareness would transformed.


RESEARCH


How do we improve treatments?

Through increased research, more documented evidence of what is working in practice and the sharing of good practice, innovation and intelligence. Ultimately, however, a good treatment for any individual is about finding what actually works for them, not what is supposed to work for them.

What options are there aside from drugs?

Examples of therapeutic non-drug treatments that have been shown to alleviate dementia symptoms include music, art, dance, reminiscence, aromatherapy, massage, exercise, yoga, light therapy, cooking, gardening, sensory therapy, sculpture, animal therapy, poetry etc. The list is endless, but it’s about finding what is right for each individual.

How do we prevent dementia?

With over 100 different forms of dementia, not enough is yet known about each form and how to prevent it. On a general level, following all the well-known advice about healthy diet and lifestyle, regular exercise, and ensuring that you have enough sleep can only be a positive step in trying to prevent a host of illnesses and diseases, including dementia.

Will we ever have a cure for dementia?

Science is advancing. One day maybe we will!


THE FUTURE


Can we cope with the predicted levels of dementia in the future?

Many of our health and social care systems are already overstretched. Far more capacity needs to be built into these systems in order to fully support people with dementia now and in the future. We will also need to look towards innovation and flexible care models to ensure that we can meet demand for services and expectations of what services should be providing.

Is technology the answer to improving care?

Technology is an increasingly important factor, and for people with young-onset dementia it has a particular interest as individuals in this age bracket are often leading very technology-rich lives at the point that they are diagnosed. Technology undoubtedly has its place, but it must never be seen as a replacement for human contact and interaction.

What can the G8 Dementia Summit produce?

Hopefully a really positive consensus on the way forward for research and care for people with dementia worldwide. It will provide an unprecedented platform on which to discuss the major issues facing professionals and families, and provide a much need focus on a disease that poses one of the greatest challenges to relationships, medicine and care that the world has ever seen.

---

This is, of course, just a snapshot of the current picture. Join the debate by adding your comments below.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Putting hope to good use

The most enduring question in dementia is surely the one that asks if we will ever find a cure? It is something people living with dementia long for, something their relatives desire above anything else, and something that those who are bereaved as a result of dementia wish had been discovered years ago. In short, a cure for dementia would represent possibly the ultimate medical breakthrough.

Sadly that day is not here yet, and despite almost weekly headlines of potential new treatments and theories on dementia that promise so much, the cure proves as elusive as ever. This is largely because there is still so much to learn about dementia, its many forms, and within each of those, understanding how they manifest themselves uniquely in each individual. It is, by anyone’s standards, a huge task.

In the meantime, all we really have is hope. They say it’s the hope that kills you, but I think in relation to healthcare hope should give you purpose and direction. For scientists and academics hope represents challenge – the chance to make that breakthrough that you will be remembered by. For pharmaceutical companies, whose influence in healthcare is arguably far more extensive than it perhaps should be, hope offers the promise of big business and huge profit.

For the rest of us, living, loving and losing our relatives to dementia, all the research, papers and trials we hear about seem a world away from real life. For us hope represents a need for action, and that indescribable feeling of wanting to be able to do something, anything, to make our loved ones well again. For someone who is living with dementia, hope represents frustration, and a realisation that when you are living with a terminal disease the breakthrough that provides a cure just cannot come quickly enough.

This outlook may seem very bleak, but in the midst of it there is potential. Not for a cure by this time next week obviously, but for the more immediately achievable aim of making living with dementia a more positive experience. Positivity about dementia is very bound up by the need for a cure. The fear is that whilst a cure remains elusive, improvements in dementia care will always be held back by the one element that is missing, rather than all the other elements that we can improve upon right now.

Problems in everything from diagnosis to end-of-life care have been attributed to the lack of a cure. Lower than expected diagnosis rates have been linked to an attitude that without a cure what is the point in diagnosing (not a view I share but one that has been widely touted). Poor care post-diagnosis has been attributed to there being no point in providing better care because the prognosis for everyone with dementia is terminal regardless of anything we do (another viewpoint I don’t share). Even unacceptable standards in end-of-life care are linked to the lack of a cure for dementia.

People who are dying of cancer are considered to have lost a battle that they at least had a stake in given the many treatments that have been developed to try and cure the numerous cancers. The hospice movement embraces people who are dying from cancer and provides some truly exemplary examples of compassion in end-of-life care. In contrast people with dementia aren’t likely to get better regardless of how early they are diagnosed or whatever treatment they are offered. Theirs is considered a losing battle from day one, and somehow a less worthy one because there is no cure. For them hospices generally aren’t an option, and an end-of-life that is chaotic, undignified and very confusing often awaits.

I would argue that using the lack of a cure as an excuse for anything that detriments people living with dementia is never justifiable. In wanting that elusive breakthrough so badly we are in danger of losing sight of what is more immediately achievable. In setting so much store by having a cure, dementia comes out as the poor relation to all the other major diseases that at least offer the potential of recovery. And worse of all, we struggle to move away from the perception of a diagnosis as a death sentence and the years afterwards as time on death row.

I’m not saying give up trying to find the breakthrough that could end dementia, far from it, but we must not let our desire for a cure obscure the need for a more proactive approach right now to ensure that living with dementia is just that, living. It’s about taking our hopes, challenges and frustrations and seeing how we can make life better for people with dementia today, while the scientists and academics do the work that will one day change the prognosis of dementia and with it, change our world.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook