World Alzheimer’s Day marked globally today
By Daphne Alcantara, GADS Chairperson
Alzheimer’s Disease International (ADI), the international federation of 105 Alzheimer and dementia associations around the world, is today releasing the World Alzheimer’s Report 2022 – Life after diagnosis: Navigating treatment, care and support, which was co-authored by McGill University.
This year’s theme, “Know Dementia, Know Alzheimer’s” continues on from the 2021 campaign which focused on diagnosis, the warning signs of dementia, the continued effects of Covid-19 on the global dementia community and more. The hashtag of World Alzheimer’s month //KnowDementia //KnowAlzheimers and the tagline “Together we can do so much” really encapsulates the essence of this year’s World Alzheimer’s Month.
This year the key focus area of the World Alzheimer’s Report 2022 is post diagnostic support, something that is often forgotten once people have been diagnosed, with terrible consequences for families who could have otherwise been better prepared with information that could lower the impact of a diagnosis and its aftermath. It calls for the urgent need for significant improvements to essential post-diagnosis treatment, care and support services for the over 55 million people living with dementia across the globe and robust plans to support the forecast 139 million by 2050.
Following recent developments and potential breakthroughs, in both dementia treatment and support, the campaign aims to highlight the importance of support for people living with dementia, their families and carers following a diagnosis. Through its rigorous approach the report looks at the role of governments, healthcare professionals and civil society in post-diagnostic support. It also highlights gaps and shines a light on the experiences of people who are living with dementia, their families and carers.
Post-diagnosis dementia care, treatment and support refers to multiple interventions that can improve the quality of life for those living with dementia, including both pharmacological and non-pharmacological treatments, caregiving, access to health and social care, support for daily life activities, home adaptations, social inclusion and respite.
“We don’t question whether people with cancer need treatment, so why is it that when people receive a dementia diagnosis, they are often not offered treatment or care ? Repeatedly, they are just told to get their end-of-life affairs in order. While dementia doesn’t yet have a disease-modifying ‘cure’, there is clear evidence that demonstrates that appropriate post-diagnosis treatment, care and support significantly improves the quality of lives of those living with this disease, allowing many to maintain independence for longer”, says Paola Barbarino, ADI CEO
Barbarino says, “She is sympathetic to the pressure that healthcare professionals are under and governments must invest to support them as the world cannot afford to let post-diagnosis dementia treatment fall to the wayside. The pressure on global healthcare systems during the pandemic has further exacerbated the ability for healthcare professionals to provide adequate post-diagnostic treatment, care and support for people living with dementia.”
“Globally, clinicians are both under-educated on dementia and under-resourced to provide adequate post-diagnostic care for people living with dementia”, says Barbarino. “It is up to governments to shore up their healthcare systems so that it is possible for healthcare professionals to provide high quality care that people living with dementia desperately need”.
ADI recommend that a first step governments can take should be committing to identifying a trained ‘navigator’ to act as liaison for a newly diagnosed person with dementia, to enable them to connect and engage with the vital supports and services they need.
“It will greatly improve the quality of life for a person with dementia if they have clear access to health resources, care, information, advice, support and importantly life adaptations and adjustments”, say Barbarino. “Ensuring these navigators can act as a single point-of-contact for people living with dementia could be the key to helping navigate this incredibly complex journey”.
The United Nations already recognises dementia as a disability and ADI calls for post-diagnosis care to be recognised as a human right and is urging governments across the globe to incorporate post-diagnosis care into their national dementia planning.
GADS Chairperson, Daphne Alcantara says “This World Alzheimer’s Month and beyond it is essential that people with dementia, their families and carers are provided with guidance and support following a diagnosis. Providing post-diagnostic support and care is fundamental for the well-being of people living with dementia, their families and carers. We need commitment from HM Government to the development and implementation of the Gibraltar National Dementia Strategy, the appointment of a Dementia Co-ordinator and Dementia Liaison Manager, supported by robust health and care systems policies to improve the diagnostic pathway leading to a more comprehensive post diagnosis support.”
“Dementia care is continuously evolving and requires a holistic and dynamic approach to ensure that future challenges through the dementia journey are addressed proactively. GADS not only aims to transform the living experience for people with dementia for today, but to be at the vanguard of how health and social care services are delivered, designed, funded, commissioned and evaluated in the future”.
“Better data governance to improve quality of care is key for improving dementia care, yet there are obstacles to using health data effectively, such as, when a person has already been diagnosed with dementia, their diagnosis is not shared when they are (for example) visiting A & E or have to be admitted to hospital, thus compromising high quality care”.
“GADS vision is to create a society where every person living with dementia, their families and carers receive quality, compassionate and competent care; from early diagnosis through end of life care and in all are settings, whether at home, in hospital or in residential care; we need health and social care providers to be available so there is more consistency to access care and support”.
“GADS goal is clear; we want people living with dementia, their families and carers to be at the heart of everything, we want their well-being and quality of life to be first and foremost in the minds of those providing health and social care services, recognising that each person with the condition is an individual with specific and often differing needs”.
If you are concerned and recognise any of the warning signs of dementia, do not hesitate to speak to your doctor or contact :-
The Gibraltar Alzheimer’s & Dementia Society
Email : firstname.lastname@example.org
Tel : (00350) 56001422
Facebook : https://www.facebook.com/gadsgibraltar
Memory Walk this evening
This evening GADS will hold a family friendly Memory Walk suitable for all ages and abilities to Unite Together Against Dementia with your family and friends.
Who Will You Walk For ? Walk for your granny, for your grandad, for your mum, for your dad or for a loved one and show your support to people living with dementia and honour those who are no longer with us. We encourage everyone to wear purple the signature colour of Alzheimer’s..
His Worship the Mayor, will start the Memory Walk from The City Hall at 7.00pm (see route map).
Mount Alvernia (ERS Residential) will this evening be lit in purple and The Tower of Homage will be lit in Purple from Tuesday 20th Sept to Sunday 25th to raise awareness and recognise the Dementia Journey.