For those caring for a family member with dementia
"When a family member is diagnosed with Alzheimer's disease or another dementia, families have a lot of questions," says Marian Hodges, M.D., MPH, of Providence Medical Group-Northeast. "Accessing the information they need can be a daunting task for family caregivers."
"Primary care providers needed a book to give to family caregivers to answer their questions, and to help the family caregiver and the primary care provider work as a team to care for the family member with dementia," Dr. Hodges says.
Dr. Hodges is a geriatrician who has been seeing patients with dementia since she joined Providence Portland Medical Center internal medicine residency faculty in 1992. In 2010, Anne Hill, the daughter of a patient she cared for with Alzheimer's, asked her why there were resource notebooks for Providence patients with cancer but not with dementia. Dr. Hodges lamented that she had no such resource.
It was during a conversation over coffee that the two of them decided to write this resource together. They applied to Providence Portland Medical Foundation for support to write the book they wanted, and to study its effectiveness with family caregivers. In 2011, they finished their first draft of "Help is Here: When someone you love has dementia."
Providence Center for Outcomes, Research and Education studied the effectiveness of "Help is Here" with a group of 400 family caregivers and found that the book increased their confidence in caregiving and their knowledge of what to expect. Dr. Hodges and Ms. Hill rewrote sections of the book based on that feedback and reprinted the book in May 2014.
"Help is Here" was written for primary care providers or their office to give to family caregivers. "Help is Here" is different from most books about dementia because it approaches the journey the family is on from the family caregiver's point of view. It can be given anytime during the disease course but is most valuable early on.
"Help is Here" includes simple, easy-to-understand advice on:
- Things to think about soon after a family member is diagnosed with dementia, such as how to make a house safe
- How to communicate more effectively with a family member who has dementia so that there are fewer stressful conversations and more happy days
- Things to think about as dementia progresses, including how to manage some of the challenging behaviors of later dementia
- How the family caregiver can communicate more effectively with others in the family
- How the family caregivers can take care of themselves – a critically important consideration
- When the physician should be called for assistance
"Help is Here" is distributed to more than 40 Providence Medical Group primary care clinics in Oregon and southwest Washington. The book also is available for purchase online.