Joanne Koenig Coste

Joanne Koenig Coste, author, lecturer and outspoken advocate for Alzheimer’s disease (AD) for more than 40 years passed on Tuesday, February 22 at Brigham and Women’s Hospital in Boston, MA. She was born in Natick MA. and is survived by her husband of 36 years, Edward Coste of Falmouth, MA.

She was most proud of her children around which her world revolved. She leaves behind her immediate family, daughters Kristen Zukowski (and husband Todd Zukowski) of West Dennis, MA and Wendy McGrane of San Rafael, CA who were by her side until the end - and her son, Jason Koenig of Tempe, AZ. Her son, Scott McGrane predeceased her in April 2019. She cherished her role as Mummum, grandmother to Shayna Zukowski (and husband Scott Hyman) of Boston, MA; Tyler Zukowski (and fiancé Brittany Hayes) of New York City; Garrett Strang of Denver, CO; Hunter Strang of Los Angeles, CA; and Jameson McGrane of Rockville, MD. She joyfully embraced being a great-grandmother with the birth of Bennett Hyman last May. Additionally, Joanne leaves behind many colleagues and friends who worked with equal passion to create a better world for patients and families dealing with Alzheimer’s.

Joanne was well-known in the New England area for her boundless empathetic support and the educational outreach programs she created for patients, families and professional caregivers, primarily through support groups. She introduced a groundbreaking approach to Alzheimer’s care, habilitation, which aims to maximize the patient’s functional independence and create moments for success by stepping into the patient’s world. This method and her personal tried and true practices for caregivers became the premise of her bestselling book, Learning to Speak Alzheimer’s. The book is available in four European countries, Australia and Japan; has been translated into six languages; and was selected by the World Health Organization for Medical School libraries across the country.

After a career in modeling with a Boston modeling agency, she entered the Alzheimer’s world in 1976 when her husband succumbed to early onset neurological dementia. In 2004, the New York Times article A Conversation with Joanne Koenig Coste; A Wife Learns to See with Alzheimer’s Eyes introduced the world to her personal experience and struggle with her husband’s dementia.

Joanne was the founder of The Alliance of Alzheimer Care Partners – a grassroots organization designed to elevate the status and offer support to professionals working with AD patients in the community. She was a past Chairman of the Board of Directors for the Massachusetts Chapter of the Alzheimer’s Association and was honored as Humanitarian of the Year by the National Alzheimer’s Association. She was a member of the board of the American Journal of Alzheimer’s Disease, and the President of Alzheimer's Consulting Associates which implemented state-of-the-art Alzheimer’s care in the United States. Three decades ago, Joanne designed the program and environment for one of the first Alzheimer’s specialized buildings in the U.S. at the Wellesley Alzheimer Center.

Joanne lectured nationally and taught at her alma mater, Cambridge College, Boston. She was selected by Readers Digest as a National Health Hero and featured on NBC Nightly News with Tom Brokaw as a Woman to Watch in the 21st Century for her pioneering efforts on behalf of AD patients and families.

While Joanne loved working in her perennial garden, swimming at the beach, writing poetry, creating her own recipes in the kitchen and sharing her positive outlook on life with others, her greatest passion was leading support groups. Here, she could see the gift of habilitation in the present moment. In these weekly sessions, she said we can know, in our spirit and our heart, that we are doing the best we can- we have offered the patient chances to be successful and both of us can feel worthy.

A Memorial Service in remembrance of her life will be held in the early Spring. Donations may be made to the Alzheimer’s Foundation of America (alzfdn.org) in honor of Joanne Koenig Coste.