The Language of Dementia | Real World Research

New research from Penn State and the Benjamin Rose Institute on Aging finds that caregivers of people with dementia are not listening to what the people they care for want.

The researchers interviewed 256 pairs of people. In each pair, one person had  mild to moderate dementia, the other was the caregiver.

From a press release from Penn State:

The researchers interviewed members of the pairs separately, asking questions related to how much value they place on five core values: autonomy, burden, control, family and safety. For example, one question focused on the level of importance a dementia patient gave to the ability to spend his or her own money in the way he or she wants.

“Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values,” said [lead researcher Steven] Zarit. “For example, the person with dementia might think it is very important to continue to be part of family celebrations, but his or her caregiver might not.”

So the caregivers/decision makers aren’t taking into account what the person with dementia values.  That’s really sad.

A few years ago I helped write a book titled I Can Still Laugh: Stories of Inspiration and Hope from Individuals Living with Alzheimer’s. My expert co-author was Audette Rackley at the Center for BrainHealth, part of the University of Texas at Dallas (my alma mater, and a current writing client).

The book is based on an intervention called cognitive stimulation, a dry academic name for something rich and human. The intervention supports things the person with dementia can do at any time, rather than trying prop up declining abilities. Helping people with dementia remain productive and connected helps mitigate the disease’s damaging byproduct: depression.

I Can Still Laugh focuses on a group of people with early-onset Alzheimer’s or other form of dementia. The group—mostly men, all professionally successful, all diagnosed in their 50s and 60s–called themselves the Stark Club, for their most dynamic member, whose donation also supported the research. Temple Stark was a loving guy with a big laugh and a sunny attitude who was diagnosed when he was 54 years old, a father of two teenage daughters at the peak of his career as an insurance underwriter. The book’s title is a quote from Temple.

Continue reading here: blogs.psychcentral.com

Chemical found in grapes may protect against Alzheimer’s disease

Researchers at Mount Sinai School of Medicine have found that grape seed polyphenols—a natural antioxidant—may help prevent the development or delay the progression of Alzheimer’s disease.

The research, led by Giulio Maria Pasinetti, MD, PhD, The Saunder Family Professor in Neurology, and Professor of Psychiatry and Geriatrics and Adult Development at Mount Sinai School of Medicine, was published online in the current issue of the Journal of Alzheimer’s Disease.

Read about it at alzheimersreadingroom.com

Chemical found in grapes may protect against Alzheimer’s disease

Researchers at Mount Sinai School of Medicine have found that grape seed polyphenols—a natural antioxidant—may help prevent the development or delay the progression of Alzheimer’s disease.

The research, led by Giulio Maria Pasinetti, MD, PhD, The Saunder Family Professor in Neurology, and Professor of Psychiatry and Geriatrics and Adult Development at Mount Sinai School of Medicine, was published online in the current issue of the Journal of Alzheimer’s Disease.

Read about it at alzheimersreadingroom.com

Ageing and Disability in Humanitarian Response: A Resource Book on Inclusive Practices | ReliefWeb

This is just the preface. If you click through to the original at the bottom, you’ll find a download link on that page.

PREFACE

Older Persons 7%2 (of the total population) and persons with disabilities 10%3 (of the total population) equaling at least 3 million persons affected by the floods. Due to the massive extent of the floods and ensuing crisis, and relying on repeated past experience of such crises, persons with disabilities and older persons are forgotten in the humanitarian response and reconstruction phase. Response by the main agencies is designed uniformly and therefore does not take into account the particular vulnerabilities and contributions of different groups within the population such as persons with hearing, visual, physical and intellectual disabilities, (man, women and children) older persons (man, women). If particular attention is not paid towards their inclusion and participation in the humanitarian response, these persons will remain largely “invisible” and will not be in a position to access properly and equally relief and early recovery response initiatives.

To ensure that older persons and persons with disabilities are included in the emergency and early recovery response in Pakistan via mainstreaming Aging and Disability Task Force was formulated in September 2010.

Publication of this report comes at a time when the Government of Pakistan has further demonstrated its commitment to improve the lives of Persons with Disabilities through ratifying the UN Convention on the Rights of Persons with Disabilities4. It aims to secure for the estimated 650 million persons with disabilities (including women with disabilities) across the world the same human rights as so called “non-disabled persons” have – and on an equal basis with them.

Pakistan is a signatory to the 2002 Madrid International Plan of Action on Ageing, which calls for each older person to have a secure income, access to health care, a safe place to live, an opportunity to participate in the community, opportunities for continuous learning and personal growth, protection from harm from those he/she should be able to trust, and the right to make decisions for him/herself.

This report brings together the available evidence to review how International NGOs, NGOs, Disabled People Organizations and other stakeholders contributing in disability and ageing sector with mainstreaming of disability and/or ageing issues in their mandate.

In producing this report we became aware that there was a lot of useful data collected by ADTF member organizations which have helped ADTF to review the areas for further progress. However it has also become apparent that more needs to be done to ensure consistent data collection disaggregated by impairment type, gender and age is still to be initiated throughout the humanitarian response.

This report outlines the ADTF Member’s organizations commitment towards mainstreaming Aging and Disability in humanitarian response, with the support of Protection Thematic Working Group and future endeavors of ADTF. This report concludes by acknowledging the steady progress ADTF have made to date whilst recognizing the continued need for focused action and developing technical guidelines initially for Health, WASH and Shelter.

The ADTF has concluded that progress needs to be accelerated on establishing a new social model, which draws a system where:

• Emergency relief stakeholders (donors and implementing partners) have improved knowledge and understanding on ageing and disability issues in Pakistan

• Actors of the emergency response (International and local NGOs, Agencies, Gov bodies and funding organizations) have increased capacity to include Older Persons and Persons with Disabilities into in their activities

• The concerns and voices of all types of disabilities and older persons (gender sensitive) are more comprehensively represented in the design and implementation of the ADTF activities

This process needs to be based on integration, where people participate fully and are supported to individually access the full range of opportunities that are open to everyone else.

The success of implementing the Ageing and Disability Task Force mandate depends on the contribution of many stakeholders, but most of all Government, UN Humanitarian Actors, Disabled People’s Organizations, NGOs and INGOs, who must give a lead on implementing the process of change.

We fully recognize the resource implications and urge all stakeholders to begin the necessary process of reform their policies and strategies for the inclusion of Persons with Disabilities and Older Persons.

ADTF is committed to advocate for the rights of Persons with disabilities and older persons and their inclusion in emergency and development initiatives.

Abia Akram (Ms.)
Coordinator Ageing and Disability Task Force

via reliefweb.int

 

Ageing and Disability in Humanitarian Response: A Resource Book on Inclusive Practices | ReliefWeb

This is just the preface. If you click through to the original at the bottom, you’ll find a download link on that page.

PREFACE

Older Persons 7%2 (of the total population) and persons with disabilities 10%3 (of the total population) equaling at least 3 million persons affected by the floods. Due to the massive extent of the floods and ensuing crisis, and relying on repeated past experience of such crises, persons with disabilities and older persons are forgotten in the humanitarian response and reconstruction phase. Response by the main agencies is designed uniformly and therefore does not take into account the particular vulnerabilities and contributions of different groups within the population such as persons with hearing, visual, physical and intellectual disabilities, (man, women and children) older persons (man, women). If particular attention is not paid towards their inclusion and participation in the humanitarian response, these persons will remain largely “invisible” and will not be in a position to access properly and equally relief and early recovery response initiatives.

To ensure that older persons and persons with disabilities are included in the emergency and early recovery response in Pakistan via mainstreaming Aging and Disability Task Force was formulated in September 2010.

Publication of this report comes at a time when the Government of Pakistan has further demonstrated its commitment to improve the lives of Persons with Disabilities through ratifying the UN Convention on the Rights of Persons with Disabilities4. It aims to secure for the estimated 650 million persons with disabilities (including women with disabilities) across the world the same human rights as so called “non-disabled persons” have – and on an equal basis with them.

Pakistan is a signatory to the 2002 Madrid International Plan of Action on Ageing, which calls for each older person to have a secure income, access to health care, a safe place to live, an opportunity to participate in the community, opportunities for continuous learning and personal growth, protection from harm from those he/she should be able to trust, and the right to make decisions for him/herself.

This report brings together the available evidence to review how International NGOs, NGOs, Disabled People Organizations and other stakeholders contributing in disability and ageing sector with mainstreaming of disability and/or ageing issues in their mandate.

In producing this report we became aware that there was a lot of useful data collected by ADTF member organizations which have helped ADTF to review the areas for further progress. However it has also become apparent that more needs to be done to ensure consistent data collection disaggregated by impairment type, gender and age is still to be initiated throughout the humanitarian response.

This report outlines the ADTF Member’s organizations commitment towards mainstreaming Aging and Disability in humanitarian response, with the support of Protection Thematic Working Group and future endeavors of ADTF. This report concludes by acknowledging the steady progress ADTF have made to date whilst recognizing the continued need for focused action and developing technical guidelines initially for Health, WASH and Shelter.

The ADTF has concluded that progress needs to be accelerated on establishing a new social model, which draws a system where:

• Emergency relief stakeholders (donors and implementing partners) have improved knowledge and understanding on ageing and disability issues in Pakistan

• Actors of the emergency response (International and local NGOs, Agencies, Gov bodies and funding organizations) have increased capacity to include Older Persons and Persons with Disabilities into in their activities

• The concerns and voices of all types of disabilities and older persons (gender sensitive) are more comprehensively represented in the design and implementation of the ADTF activities

This process needs to be based on integration, where people participate fully and are supported to individually access the full range of opportunities that are open to everyone else.

The success of implementing the Ageing and Disability Task Force mandate depends on the contribution of many stakeholders, but most of all Government, UN Humanitarian Actors, Disabled People’s Organizations, NGOs and INGOs, who must give a lead on implementing the process of change.

We fully recognize the resource implications and urge all stakeholders to begin the necessary process of reform their policies and strategies for the inclusion of Persons with Disabilities and Older Persons.

ADTF is committed to advocate for the rights of Persons with disabilities and older persons and their inclusion in emergency and development initiatives.

Abia Akram (Ms.)
Coordinator Ageing and Disability Task Force

via reliefweb.int