Online Support Group for Family Caregivers/Family Advocacy

 


On-Line Support Group

The National Task Group on Intellectual Disabilities and Dementia Practices is pleased to announce the availability of an online support group for family caregivers, The Group is open to family caregivers of someone with Down syndrome or any other intellectual disability who also has, or is, suspected of having Alzheimer’s or another type of dementia. The goal is to provide support to families so they can share their experiences and learn from each other.  The support groups are lead by Jadene Ransdell and Mary Hogan, both family members.

Ms. Jadene S. Ransdell is the chair of the NTG's Online Support Workgroup and will be the facilitator for the support groups. Groups are designed to start and continue a dialog among families to offer one another support and guidance. The size of each group is limited to 12 family caregiver participants so that everyone has an opportunity to share. The structure of the meeting is determined by participants. A brochure with more information about the support groups can be accessed here.

To join a group, contact Ms. Ransdell (email below) with the subject line stating “NTG Online Support Group” and provide the following information: Your first and last name, email address, telephone number, the age of the loved one for whom you care and your relationship to that person. Also include any comments you wish to share about what you hope to gain from being part of an online support group. Also, let us know if you are new to GoToMeeting. Ms. Ransdell will reply with further information.

FMI: Jadene S. Ransdell, Down Syndrome/Alzheimer’s Family Advocate

 

NTG Family Advocacy Group

The National Task Group on Intellectual Disabilities and Dementia Practices provides a connection for families (parents, siblings, other kin) challenged by providing primary care for adults affected by dementia. It also is involved in advocacy for the rights of people with dementia and their caregivers.  NTG's family advocates provide consultation and counseling to family members and others involved in primary caregiving or seeking information about dementia and caregiving challenges.  NTG's family advocates also attend and provide comments at the quarterly meetings of the national Advisory Council on Alzheimer's Research, Care and Services. The Advisory Council makes recommendations to DHHS for priority actions to expand, coordinate, and condense programs in order to improve the health outcomes of people with Alzheimer's Disease and Related Dementias (ADRD) and reduce the financial burden of these conditions on those with the diseases, their families, and society.

Ms. Mary Hogan is the chair of the Family Advocacy Group.  Resident in Southern Maine, Ms. Hogan is the sister of a man with Down syndrome who passed away recently after being diagnosed with Alzheimer's disease.

Currently, the NTG Family Advocacy Group is working with the National Down Syndrome Society and the Alzheimer's Association to produce a family-oriented informational booklet on dementia and Down syndrome.  The production timeline calls for the booklet to be available in early 2017.

For more information or to make contact with the NTG's Family Advocacy Group, contact Mary Hogan, Family Advocate

 

Useful Family Carers Resources

Down Syndrome Scotland has issued a helpful guide for family members caring at home for a person with Down syndrome affected by dementia.  To access Living with Dementia: A Families and Carers Guide.

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