Young Carers Awareness Day

by Annie Bliss, ADI Communications and Policy Manager

Globally we know that the number of people living with dementia is around 52 million and is set to triple to 152 million by 2050. We also know that every year, 82 billion hours are spent providing informal, unpaid care by family members in the home and that over 70% of this care is provided by women. (To put this in perspective, 82 billion hours is equivalent to 40 million full-time jobs).

Despite having these figures, something we know less about is young people providing this type of care.

One of the reasons we have so little information on this is that young people caring for a parent or relative with dementia do not typically self-identify as a ‘young carer’. This is common across other areas of health, and unfortunately prevents young people from accessing support services that can be crucial for them to cope with their caring responsibilities and look after their own well-being.

Youth participants in the Home Music Programme, set up by Alzheimer’s Indonesia (ALZI)
Continue reading “Young Carers Awareness Day”

Meera Pattabiraman, Chair of Alzheimer’s Disease and Related Disorders Society of India (ARDSI), on recent policy development around dementia

Meera Pattabiraman, Chair of ADI Member Alzheimer’s & Related Disorders Society of India (ARDSI), writes about ARDSI’s successful engagements with the Ministry of Health and Family Welfare in India, a country where over 5 million people live with dementia.

Alzheimer’s & Related Disorders Society of India (ARDSI) has been diligently following up with the Ministry of Health and Family Welfare since we submitted the Dementia India Strategy Report to then Health Minister, Sri. J P Nadda, last September. As we have a new Health Minister, it became imperative that we bring to his attention the mandate of the WHO’s Global Action Plan calling for all countries to develop their own national dementia plans.

Dr Radha Murthy, Vice Chair of ARDSI (right) and Meera Pattabiraman, Chair of ARDSI (centre), handing over the request for a national dementia plan to India’s Health Minister, Dr Harsh Vardhan.
Continue reading “Meera Pattabiraman, Chair of Alzheimer’s Disease and Related Disorders Society of India (ARDSI), on recent policy development around dementia”

Māori, Mana and Mate Wareware: Rauawaawa Kaumātua Charitable Trust and its experience in supporting Kaumātua with Dementia

The Rauawaawa Kaumatua Charitable Trust in Kirikiriro, NZ. Photo courtesy of the Rauawaawa Kaumatua Chartiable Trust Facebook page.

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

Rangimahora Reddy and Pare Meha of the Rauawaawa Kaumātua Charitable Trust, as well as Dr Etuini Ma’u of the Waikato District Health Board and Professor John Oetzel of the University of Waikato, contributed this piece that delves into the complexities surrounding diagnosing mate wareware (dementia) in Māori communities and how tailored cultural programmes can aid in supporting the individual and their whānau (family).

Continue reading “Māori, Mana and Mate Wareware: Rauawaawa Kaumātua Charitable Trust and its experience in supporting Kaumātua with Dementia”

Stigma and response to dementia in Guatemala’s Indigenous population

Prof Ricardo F. Allegri, MD, PhD and María Cecilia López Murga at XII Congreso Iberoamericano de Alzheimer, November 2019. Photo courtesy of Asociación Group Ermita Alzheimer de Guatemala

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of other chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

María Cecilia López Murga, the Executive of Asociación Group Ermita Alzheimer de Guatemala, contributed an essay that focuses on the sometimes difficulty in addressing dementia within Guatemala’s Indigenous communities and how Asociacion Group Ermita tries to address these challenges.

María Cecilia writes:
Dementia in Guatemala, in our indigenous peoples, is a taboo. The most numerous Indigenous people in the country is the Maya because it represents 39.3% of the total population and is made up of 22 linguistic communities, so for us it is a total challenge.

With the promotion and communication of our Association and with the use of social networks we have been able to reach the interior of our country and somehow make ourselves present in these communities who already come to our Grupo Ermita Association to seek help, support, comfort and information . In fact we have had the visit of families who have to travel 8 or 10 hours to reach us with their sick relatives.

Continue reading “Stigma and response to dementia in Guatemala’s Indigenous population”

145 Indigenous languages and no word for dementia: use of innovation and technology to help overcome stigma

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of other chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

ADI Member Dementia Australia contributed this piece that looks at the importance of culturally sensitive diagnostic methods when addressing dementia within Indigenous Australian communities.

Maree McCabe, CEO of Dementia Australia and contributor to the piece, asks: “Dementia is complex. How do we communicate what is a complex message, to the many different and varied communities across this vast land? Technology combined with culturally appropriate cognitive assessment tools could be the answer.

Continue reading “145 Indigenous languages and no word for dementia: use of innovation and technology to help overcome stigma”

The circle of life; Indigenous knowledge about dementia in Canada

Dementia Research Advocacy Group.
Left to right, back row: Jules Osawamick, Roseann Debassige, Bonita Bebamash and Bill Antonie
Left to right, front row: Melissa Blind, Monica Pheasant, Jean McGregor-Andrews, Karen Pitawanakwat and Kristen Jacklin.

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

Kristen Jacklin, Professor of Medical Anthropology at the University of Minnesota Medical School Duluth and Karen Pitawanakwat, Registered Nurse and Community Researcher for Naandwechige-Gamig Wikwemikong Health Centre and member of the WikWemikong Unceded Reserve, contributed this piece that underlines the necessity in understanding the experiences of dementia within Indigenous communities in order to meet dementia care needs in a culturally appropriate way.  

Karen Pitawanakwat writes: “I want to introduce the concept of the circle of life as it relates to four of our seven grandfather teachings. Our elders are living in their seventh stage of life.  They have a lifetime of wisdom that is respected.  Interactions with an elder instinctively show kindness and love.  We are a humble people who value our time walking here upon the earth as a spiritual collective to learn and share for the benefit of seven generations who will walk the same earth ahead of us. In an elders last stage they are transitioning back into the spiritual world, part of the continuum of life.”

Continue reading “The circle of life; Indigenous knowledge about dementia in Canada”