Caregiving and IDD and Dementia: Report of the Pre-Summit Workgroup on Caregiving and IDD

This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.  The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer’s Association.  The purpose was threefold:
  1. assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities;
  2. translate the contributions of these findings to the greater dementia care agenda; and
  3. promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform.

 

The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD.  Considered were five major areas related to care and caregiving:
(1) family caregiving interventions;
(2) supportive care settings;
(3) effects of diversity;
(4) screening and early detection; and,
(5) bridging service networks.
Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations.
 
Prof. Tamar Heller, RRTCDD Director and chair of this ad hoc working group will be speaking at the Summit, and conveying the workgroup’s recommendations.

2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers

The National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers is two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups.

Source: 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers

Registration is open for the 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers.

Registration is free, but space is limited so please register as soon as possible if you want to attend in-person on the NIH campus. To register, click here. If you prefer to watch the videocast, please register and choose the “videocast” option. A link and additional details will be sent to you approximately one-week prior to the event.

The Summit is two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups. It will be held at the Natcher Building’s Ruth L. Kirschstein Auditorium of the National Institutes of Health in Bethesda, Maryland, on October 16 and 17, 2017, and it is free and open to the public.

The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers.

We are very pleased to announce that Prof. Tamar Heller, the chair of the ad hoc working group on caregiving on dementia and intellectual disability (commissioned by the NTG) will be speaking at the Summit and conveying the recommendations made by the group on behalf of the NTG. The working group’s report will shortly be posted on the NTG website.

The Summit is focused on research that is needed to improve quality of person- and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers. To view the draft agenda and list of speakers, click here.

If you are interested in attending, please register early and arrange for your lodging as soon as possible as this will be a very popular event. The location in Bethesda has limited hotel space near by, but the NIH campus is on the Metro’s Red Line (Medical Center station) — so access from anywhere in the metropolitan DC area is fairly easy.

If you do decide to attend, please let us know so we can keep in touch about any ancillary activities related to the NTG.

It will be held at the Natcher Building’s Ruth L. Kirschstein Auditorium of the National Institutes of Health in Bethesda, Maryland, on October 16 and 17, 2017, and it is free and open to the public. The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers. The Summit is focused on research that is needed to improve quality of person- and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers.Please note: If you cannot attend the Summit in-person, the event will be live-streamed. If you prefer to watch the videocast, please register and choose the “videocast” option. A link and additional details will be sent to you approximately one-week prior to the event.

 

Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders

Source: The National Task Group on Intellectual Disabilities and Dementia Practices

Citation: Seven Hills Rhode Island. (2017). Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders. Woonsocket, Rhode Island: Seven Hills Rhode Island and the National Task Group on Intellectual Disabilities and Dementia Practices. For print copies contact: Seven Hills Rhode Island, 30 Cumberland Street, Woonsocket, RI 02895.

Download Intellectual Disabilities and Dementia A Caregivers Resource Guide for Rhode Islanders

Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders

This guide, while written for families of adults with intellectual disability, is a useful tool for anyone who provides care. Caregivers play an important role in the overall wellness of individuals they support. Our goal is to provide information that will be helpful to anyone who cares for adults with intellectual disability.

As individuals with an intellectual or other developmental disability age, you may see changes that are confusing and upsetting. It can be frightening not knowing what is happening to them or how to best support him or her.

This guide was designed to provide caregivers of individuals with an intellectual disability an overview of dementia, as well as provide information about caregiving and support options available in Rhode Island.

A note about Alzheimer’s disease and dementia. Alzheimer’s is a disease of the brain which causes a person to lose his or her memory and ability to function. Those losses are termed dementia. Alzheimer’s is not the only cause of dementia – see the glossary at the end for the different causes.

We hope that you will find this guide to be a foundation for your knowledge as we have included some commonly used words and phrases, a basic overview of the disease process, some tips for caregiving, as well as local Rhode Island and national organizations that offer training and services. In no way should this guide take the place of consulting with your loved one’s healthcare provider.

The guide is divided into sections, each with a different focus to aid you on your caregiving journey. You do not need to read this guide from cover to cover, rather it has been written so that you can find information you need related to the questions or concerns you may have at any time during an individual’s journey through dementia.

Above-normal blood sugar linked to dementia – Harvard Health Blog – Harvard Health Publications

There are many reasons to keep your blood sugar under control: protecting your arteries and nerves are two of them. Here’s another biggie: preventing dementia, the loss of memory and thinking skills that afflicts millions of older Americans. A study published in the New England Journal of Medicine shows that even in people without diabetes, above normal blood sugar is associated with an increased risk of developing dementia.

Source: Above-normal blood sugar linked to dementia – Harvard Health Blog – Harvard Health Publications

There are many reasons to keep your blood sugar under control: protecting your arteries and nerves are two of them. Here’s another biggie: preventing dementia, the loss of memory and thinking skills that afflicts millions of older Americans.

A study published in the New England Journal of Medicine shows that even in people without diabetes, above normal blood sugar is associated with an increased risk of developing dementia. This finding goes beyond previously seen links between diabetes and dementia. “It establishes for the first time, convincingly, that there is a link between dementia and elevated blood sugars in the non-diabetic range,” says study author Dr. David Nathan, a Harvard Medical School professor and the director of the Diabetes Center and Clinical Research Center at Massachusetts General Hospital.

Dr. Nathan teamed up with researchers across the country to look at blood sugar levels in more than 2,000 older adults—the average age was 76—taking part in the Adult Changes in Thought study. The vast majority of the study participants did not have diabetes. What the researchers found is that any incremental increase in blood sugar was associated with an increased risk of dementia—the higher the blood sugar, the higher the risk.

Why? There are only theories. “The speculation is that elevated blood sugar levels are causing more vascular disease, but it may be other metabolic issues. For example, people with elevated blood sugar often have insulin resistance which may be the link that affects our brain cells,” says Dr. Nathan.

The study does not prove that high blood sugar causes dementia, only that there is an association between the two. For that reason, don’t start trying to lower your blood sugar simply to preserve your thinking skills, cautions Dr. Nathan. There’s no evidence that strategy will work, although he says it should be studied.

But it is worth keeping an eye on your blood sugar to try to avoid developing type 2 diabetes. This disease is at epidemic proportions. Almost 26 million Americans—one in 12—have diabetes. High blood sugar is hallmark of this disease. Normal blood sugar is under 100 milligrams per deciliter of blood mg/dL after an eight-hour fast. You have diabetes if your blood sugar is 126 mg/dL or higher after a fast. People with a blood sugar reading of above 100 but below 126 have what’s called prediabetes. Nearly 80 million Americans are in that camp.

Excess blood sugar is a problem because it can lead to a variety of health problems including heart, eye, kidney, and nerve disease.

Taming blood sugar

What if your blood sugar is above normal? There’s good news in that department: You can lower your blood sugar by exercising and, if needed, losing weight. Shifting to a healthier diet with more vegetables, fruits, and whole grains and cutting back on highly refined grains can also help.

Try to get 150 minutes per week of moderate intensity activity, such as brisk walking. If that’s daunting, know that even a little activity can make a big difference in lowering blood sugar levels. Short but frequent walking breaks—as brief as a minute and forty seconds every half hour—can lower blood sugar. So can taking a walk after a meal.

And it doesn’t always have to be official “exercise.” Try taking the stairs more often, parking farther away from the store, and getting up and moving if you’ve been sitting too long. “It’s common sense,” says Dr. Nathan. “The more active you are and the less sedentary, the more likely it is that your muscles can uptake glucose, and the insulin you make will be more effective.”

Also helpful is cutting back your intake of highly refined carbohydrates, especially foods with added sugars such as sucrose, high fructose corn syrup, and also molasses, cane sugar, corn sweetener, raw sugar, syrup, honey or fruit juice concentrates. The American Heart Association recommends no more than 100 calories from sugar or six teaspoons of sugar per day for women, and 150 calories or nine teaspoons of sugar per day for men. If you’re in the prediabetic or diabetic range, you’ll want to work with a dietitian to determine your exact needs.

Making these changes is an investment, to be sure. But the payoff—better physical and mental health—is definitely worth it.

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Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia

Philip McCallion1 | Mary Hogan2 | Flavia H Santos3 | Mary McCarron4 | Kathryn Service5 | Sandy Stemp6 | Seth Keller7 | Juan Fortea8 | Kathleen Bishop9 | Karen Watchman10 | Matthew P Janicki11 | and the Working Group of the International Summit on Intellectual Disability and Dementia

End-of-life (McCallion et al 2017) J Appl Res Intellect Disabil. 2017;1–5.

ABSTRACT

Background: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. Methods: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. Results: The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. Conclusions: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

  1. University at Albany, Albany, NY, USA
  2. National Task Group on Intellectual Disabilities and Dememtia Practices, Eliot, ME, USA
  3. University of Minho, Braga, Portugal
  4. Trinity College Dublin, Dublin, Ireland
  5. Nurse Practitioner Consultant, Northampton, MA, USA
  6. Reena Foundation, Toronto, ON, Canada
  7. American Academy of Developmental Medicine and Dentistry, Lumberton, NJ, USA
  8. Catalan Foundation for Down Syndrome, Barcelona, Spain
  9. Geriatrics Consultant, Lee Center, NY, USA
  10. University of Stirling, Stirling, Scotland
  11. University of Illinois at Chicago, Chicago, IL, USA

Correspondence Philip McCallion, Center for Excellence in Aging Services, University at Albany, Albany, NY, USA. Email: pmccallion@albany.edu

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans

Karen Watchman, PhD, Matthew P. Janicki, PhD, Michael Splaine, MA, Frode K. Larsen, MPH, Tiziano Gomiero, PhD, and Ronald Lucchino, PhD

Source: ID in National Plans

Abstract

The World Health Organization (WHO) has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down’s syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans and recommended that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes, and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

Rights in mind: Thinking differently about dementia and disability

Tom Shakespeare -University of East Anglia, UK, Hannah Zeilig – University of the Arts London, UK, & Peter Mittler – University of Manchester, UK

Download Rights in Mind (2017)

Abstract

The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities.

NTG Caregivers Newsletter on ID and Dementia Practices (Volume 1, Issue 1)

Welcome to the first issue of the NTG Caregiver News (Volume 1 Issue 1) March 2017. This publication has grown out of the NTG’s Family Caregiver Online Support Group for those who are caring for, or have cared for, loved ones with Alzheimer’s and intellectual disabilities.

Once each month, we open the airwaves to share what is happening in our lives and with our loved ones. To keep the group effective for support to the families, we limit participation to those who have loved ones with dementia or are direct caregivers. As we identify topics we would like more information about, we invite specific professionals to lead our conversation. Upcoming issues of this newsletter will include some of the highlights of those conversations. In addition, watch for links to helpful resources.

This issue includes some general information on intellectual and developmental disabilities and dementias, as well as an introduction to the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices. We encourage you to visit the NTG website for more information on their activities and to become a member.

We have learned through interactions with families in the online support group that there are lots of questions, many uncertainties, multiple feelings of loss, limited resources in local communities, and great recognition that love is most important for all of us.

Please do circulate NTG Caregiver News (Volume 1 Issue 1) March 2017 among your colleagues and to any family caregiver groups with which you have contact.

Nurses’ experience of caring for people with intellectual disability and dementia

Josephine Cleary and Owen Doody

Aims and objectives. To explore nurses’ experiences of caring for older people with intellectual disability and dementia.

Background. Ageing and dementia prevalence is increasing along with the life expectancy of people with intellectual disability. As a population group, people with intellectual disability have a high prevalence of dementia, which is higher within the subpopulation of Down syndrome. People with intellectual disability live in residential care, community or residential settings, and nurses are required to adapt their practices to meet the changed needs of the individual.

Design. A qualitative Husserlian descriptive phenomenological methodology facilitated the researcher to become absorbed in the quintessence of meaning and explore nurses’ experience of working with older people with intellectual disability and dementia.

Methods. Ethical approval was obtained, and data were collected utilising semistructured interviews (n = 11). Interviews were transcribed and analysed using Colaizzi’s framework for data analysis.

Results. Three key themes were identified: ‘knowledge of dementia’, ‘personcentred care’ and ‘transitioning within the service’. The study highlights the need for proactive planning, life story books of the patient, and funding to support client and staff.

Conclusions. Overall, the study highlights the importance of knowing the person, supporting the individual and recognising presenting behaviours as outside the control of the individual. Relevance to clinical practice. This article presents the experiences of nurses caring for the older person with intellectual disability and dementia. Transitions are often very difficult for both the person and their peers, and they experience benefit from the efforts of a multidisciplinary team facilitating a person-centred approach.