December 29, 2016

Still Here: Caregiving and Dementia

53 minutes

This hour-long special is about the unspoken challenges of caring for a family member with dementia. The show explores the experience of ambiguous loss, where the person is both here and not here at the same time. Through stories, we explore why caregivers have such high rates of isolation and depression and how difficult it may be to live with the fear of getting the disease yourself. Host Dr. Anne Hallward has lived with this illness in her own family and offers creative solutions that give hope, reduce stress, and build community.

“One of the hardest things you will ever have to do, is to grieve the loss of a person who is still alive.”

Anonymous

Follow the links below to more audio, information, and resources to support the caregiver you know.

Emotional Care for the Caregiver

Economic, Legal, & Practical Resources

Family & Gender Dynamics in Caregiving

Want to have a conversation?

Use these brief audio prompts to start a conversation about caregiving.

General Resources on Caregiving

Thanks to the Hope and Grace Fund for their Generous Support of this Project.

Canadian Organizations:

Government Programs and Funding for Canadian Caregivers

Canadian Home Care Association / Canadienne de soins et services à domicile

Service Canada, Employment Insurance and Compassionate Care Benefits

Health Canada, Division of Aging & Seniors

National Family Caregiver Support Program

Canadian Mental Health Association: Family & Caregiving Support

Alzheimer Society of Canada

Canadian Hospice & Palliative Care Association

The Family Caregiver, Ontario

CARP: Caregiver Support

American Organizations:

Caregiver Action Network

AARP

Administration for Community Living

Assisted Living Federation of America – Leading national trade association serving companies that own, operate, and support professionally managed senior living communities in the United States.

Eldercare Locator – A public service of the U.S. Administration on Aging connecting you to services for older adults and their families.

Familycare America: Caregivers Library – One of the most extensive libraries for caregiving that exists today.

National Alliance for Caregiving – A non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy.

National Association of Professional Care Managers – Leading the community of Aging Life Care Professionals through education, professional development, and the highest ethical standards.

National Association for Home Care and Hospice – Represents the nation’s 33,000 home care and hospice organizations. NAHC also advocates for the more than two million nurses, therapists, aides and other caregivers employed by such organizations to provide in-home services.

National Center for Assisted Living – The assisted living voice of the American Health Care Association (AHCA).

National Institute on Aging – Researches activities dedicated to understanding the nature of aging, supporting the health and well being of older adults, and extending healthy, active years of life for more people.

Rosalyn Carter Institute – An advocacy, education, research, and service unit of Georgia Southwestern State University.

SAGE Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders – Services and advocacy for LGBT elders.

Maine Organizations:

Maine Chapter Alzheimer’s Association

Eastern Maine HomeCare – Public and private pay options for hospice care in Maine.

Home Care and Hospice Alliance of Maine – Affordable, accessible, quality home care and hospice services.

Androscoggin Home Care and Hospice – Nonprofit Medicare-certified agency.

Maine Hospice Council and Center for End of Life Care – Promoting Excellence in End-of-Life Care.

Hospice of Southern Maine – Hospice of Southern Maine’s mission is to provide compassion, care and comfort through end of life for patients with life-limiting illnesses, and support for their families.

Maine Aging and Disability Resource Center – Dementia Services; Family Caregiver Support Program – Provides many resources available for people living with dementia and their caregivers in Maine.

Memory Works, Memory Cafes – Memory Cafés are places where anyone with any form of dementia, or memory loss, can go to socialize, learn and have fun. At a memory café, people can relax and just be themselves, knowing that no one judges them and all who are there are going through similar challenges.

Maine Aging Agencies:

Central Maine Area Agency on Aging/Spectrum Generations – Augusta

Eastern Area Agency on Aging – Bangor

Southern Maine Agency on Aging – Scarborough

SeniorsPlus – Lewiston

Aroostook Area Agency on Aging, Inc. – Presque Isle

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