IFA Guest Blogger: Kate Swaffer, 2018 Australian Global Leader, 100 Women Of Influence, and Chair & CEO of the Dementia Alliance International writes for the International Federation on Ageing.
As a 49-year-old, married, working mother of two teenage sons, I was initially in deep shock when I was diagnosed with younger onset dementia. Even though I had been a nurse in a dementia unit, I had no idea younger people were diagnosed with dementia. Eleven years on, a lot has happened in the field of dementia, including activism for a rights-based approach and access to the Convention on the Rights of Persons with Disabilities (CRPD). Despite my increasing disabilities, I am still living beyond dementia.
Following diagnosis, I was advised by health care providers and an advocacy organization to “get my end of life affairs in order, to give up work, give up study, and to start attending aged care respite a day a month, to get used to it.” I’ve since Trademarked this as Prescribed Disengagement® [1-2]. Dementia is the only medical condition I know of, where people are not supported to live for as long and as well as possible regardless of the prognosis.
Not one health care professional or advocacy organization advised me dementia is a condition causing cognitive and other disabilities, albeit progressive, and none supported me to live with it using a rehabilitative or disability approach. My university, thankfully, taught me to see the symptoms as disabilities, and even today, still provide me with disability support to continue studying.
Self-prescribing a brain injury style rehabilitation and finding health care professionals who were brave enough to support this has paid huge dividends as I continue to maintain ways to function. It includes physical rehabilitation such as neuro physiotherapy, increased exercise, speech pathology, hydrotherapy, occupational therapy (not just to support my activities of daily living, but actual strategies to support my increasing disabilities), and many other interventions such as improved diet. This approach also reduces my risk of falls and many other comorbidities, therefore also contributing to improved health and well being in general.
Professor Dale Bredesen and others are showing early results of even reversing early Alzheimer’s disease or Mild Cognitive Impairment through lifestyle changes . As I had done many years before, I decided it would be better to continue to live every day as if it is my last, just in case it is, rather than worry about the end stages of dementia. I’ve become an accidental global activist for people with dementia, and whilst I still have breath and can use my voice, I will stand up for our rights, and those of our families.
In 2015, the Organisation for Economic Co-operation and Development (OECD) report Addressing Dementia: The OECD Response  concluded, “Dementia receives the worst care in the developed world”. This is abhorrent, and as an activist for human rights and access to the CRPD for people with dementia, it is my goal to ensure global change. As a co-founder and the current Chair and CEO of Dementia Alliance International , a global organization for people with dementia now in 49 countries, our members are also asking for this change.
Lack of focus on risk mitigation will also herald an economic cost that not even the rich developed countries are currently able to afford, and the human cost to this on healthy ageing will be profound. The medicalization of dementia, and enduring view of dementia through a 20th century lens, ensures increased dependence and disability. Since the World Health Organisation has clearly defined dementia as “one of the major causes of disability and dependency among older people worldwide” , it is clear the time is now to not only see it this way, but to manage it as a disability, and to support independence and functional capacity for as long as possible.
Personally, I have never had a dream for a ‘dementia free world’ as I believe that is unrealistic, and many others diagnosed with dementia feel the same. Whilst we would all like a cure, we want better care, which includes rehabilitation and support to live with dementia, not only to go home and wait to die from it.
Although dementia is not a normal part of ageing, our risk increases as we age, and I believe it is only with a rights-based approach, where human rights are embedded in national dementia plans (including rehabilitation and reablement), that we have any chance of ensuring healthy ageing for all.
Consider attending the IFA 15th Global Conference on Ageing “Rights Matter” where the importance of functional ability will be discussed in the context of brain and cognitive health under the theme “Enabling Functional Ability.”
To learn more, visit https://ifa2020.org.
References Swaffer, K. (2015). Dementia and Prescribed DisengagementTM. Dementia, 14(1), 3–6. https://doi.org/10.1177/1471301214548136  Swaffer, K. (2014/2015), Reinvesting in a life is the best prescription, Australian Journal of Dementia Care, vol. 3, no 6, 31-32.  Bredesen, D. (2017). The End of Alzheimer’s: The First Program to Prevent and Reverse Cognitive Decline, Vermillion: Random House Publishing, London UK.  The Organisation for Economic Cooperation and Development’s published report of the world’s 38 richest countries (OECD, 2015, Addressing Dementia: The OECD Health Policy Studies, OECD Publishing House, Paris).  Dementia Alliance International, www.infodai.org  World Health Organisation, (2019). Dementia Fact Sheets: Dementia, https://www.who.int/en/news-room/fact-sheets/detail/dementia
IFA Guest Blogger: Mr. Andrew Russell
In this modern world of medicine and home health care service, there is no other way to survive but to make new innovations. This plays an important role as it will help these care services to reach more and more homes and to more and more patients, young or old.
A lot of home care service providers have come up in the recent past to facilitate patient journeys. They support the needs of the patients with these innovations that help them to tackle even the most demanding patient.
Therefore, investing in such innovations is essential that will enable the home caregivers to provide safer services that will help the patients to lead a safer life in their own homes. This will not only help them in their daily activities but will also help them in other different aspects such as:
This will ensure better care and fast recovery following the evidence-based treatment in the homes of the patients. In short, innovations in home healthcare will bring together the elderly patients, their families and the caregivers as well.
As you may see, there is an incredible work done in home care jobs near me to develop a better health care system that will help them and the patients to prevent and treat diseases. This will help the patients both at the population level as well as at the individual level.
Systems for personalization
However, this will not be possible to achieve if these advancements to work are not put to the systems for personalization. Everything in the home care jobs boils down to the need for designing a better care service.
In addition to the above, there is also a need to address workplace ethics and the role of human resources. This will ensure reimaging the imperative need of securing a more diverse and talented pipeline.
Therefore, investing in innovations and creating a better and more productive organizational culture of inclusion will enable the home care agencies to honor the new age of home and health care personalization.
Looking forward in 2019
You can look forward in 2019 if you look at the different trends followed by other home caregivers and the predictions made by the experts in the industry.
Ideally, given the current state, there is a strong debate between:
This debate seems to have no end as more and more new players enter into this specific ecosystem.
Looking at the predictions, making the necessary changes in care services and organizational structure and reviewing your state every now and then will enable you to find out whether or not you are doing well and are you getting even close to be more accurate.
Accuracy in your services is primarily important which is why these predictions and innovations are also important. You must not only focus on them but also pan them out all through the year over your service and organization management.
Value based care
2019 globally will be the year for providing more value-based or value-added home care services to the patients. Therefore, you will need to design more ‘outcome-based care’ if you really want to do well in this competitive and highly demanding field. This will help you in ways more than one including:
In addition to that, it will also offer access to affordable and quality care. This will be the key to the political agendas especially if you want to do business in the emerging markets in regions such as:
In 2019, it is also expected that the lines between IT and retail healthcare industries will continue to blur. Individual care space is expected to be dominated by different major players such as:
In the East, it will be dominated by players like:
These non-traditional providers of the digital marketplace including Microsoft and IBM amongst others will dominate the entire home health space. These major organizations will provide the essential impetus to the public health systems. This will ensure both affordability and accessibility of care.
It is also expected that there will be a lot of investments made in the future for research and development of drugs and devices. This will enable the home care service providers to be more targeted so that they can meet with the unique needs of the emerging markets especially in the Asian and African markets.
The final word
In order to meet the increase in demand for home care by the aging Americans, Asians and other countries, the healthcare system as well as the home care industry must be innovative in their thinking process, care giving process and management.
Typically, it is expected that in 2019 the companies must follow a reality check with a continual review of their existing processes and focus on designing care processes with an eye on the future. For this purpose, they must follow and understand two of the most hyped technologies that should be certainly used in home health care services in this decade and that to follow. These are Artificial Intelligence and blockchain.
This ideally is the best way to stay in the competition and thrive for success in home health care services marketplace wherein lots of startups are coming up like mushrooms but few only can meet with the rising demand of such care.
IFA Guest Blogger: Ms Kimberley Littlemore, is a fellow of Swansea University Medical School and an award-winning former BBC filmmaker. As the Creative Director of eHealth Digital Media, Kimberley is responsible for producing high-quality film content, working with award-winning crews and graphic animators. Her strong academic abilities allow her to combine visual flair with an ability to master and communicate complex theoretical and medical content.
This is a picture of my father, former architect Clive Jenkins, being fitted with a pair of retinal tracking glasses for an experiment with a team from the Assistive Technologies Innovation Centre at the University of Wales in the UK. Our team was trying to see whether the technology could give us insights into the way that people with dementia interpret what they see while performing familiar tasks.
I am a former BBC producer working with the National Health Service in the UK to produce films to support people living with chronic conditions, and you’ll meet me if you have a moment to watch this film that we made as a first experiment to see how technology might throw light on some common challenges for people with dementia, and how this information can be used to create useful resources for people living with and alongside dementia.
The experiment led us to conclude that short films could be made to showcase the effects of clutter in distracting some people living with dementia from completing once familiar tasks, such as that of getting dressed as illustrated in the video. Professor Andrea Tales from the Centre for Innovative Ageing, Swansea University wrote,
“I think your brilliant film is a real-life example of such difficulties. We’ve only really done laboratory mock-ups of the environment, but your film shows what’s happing beautifully, and in a much more powerful way — especially the information about distracting information.”
See below for visual information that was garnered from the glasses by analysing the distracting nature of what my dad was seeing in the busy cupboards and shelves littered with the paraphernalia of 40-odd years of family life.
Our team is eager to develop these insights into a series of films to support formal and informal carers by sharing common experiences of dementia and solutions as well as hearing from professionals such as Professor Tales about what we know is going on in the brain. If you are interested in collaborating with us on this project to develop a series of films exploring ways to support people with dementia then please contact me at firstname.lastname@example.org.