Retired...or ReWired? Episode 12: Dealing with Dementia

Prevalence of dementia and care option

Ann Hill and Dr. Marian Hodges

Hill is co-author with Dr. Marian Hodges, Medical Director of Senior Health for Providence - Oregon, of the Help is Here series of books. 

Quoting Ann Hill:

“We published the first book, Help is Here: When someone you love has dementia (HIH), in 2014. HIH is for the family caregivers of people with dementia and we really wrote it for the primary care provider of the family member with dementia to give to family caregiver. We've found, though, that other health systems buy it by the 100s and people all over the United States order it online. In 2016 we published Help is Here: When a Resident has Dementia (HIH:R) for everyone who works in a senior residence, and a Leader Manual (LM) for a leader in the senior residence to teach HIH:R to everyone who works in the residence. Most recently, we've published a plain language, culturally adapted, with all new pictures version of the original Help is Here: When someone you love has dementia in Spanish.

You can see all the Help is Here books at the Help is Here website at www.dementiahelpishere.org.

In conjunction with the Help is Here Project and the work I do with Dr. Hodges, I do a lot of presentations to family groups, medical groups (sometimes, but not always, with Dr. Hodges who also has a geriatric practice in addition to being Medical Director of Senior health) and to staff at senior residences. 

Dementia happens when a person’s brain is injured and can’t work correctly. It changes the person’s behavior and their body is affected. If you’re caring for someone with dementia, you may find it challenging and stressful. The "Help is Here" books were written with you in mind. 

Written by a practicing geriatrician and a family caregiver of a mother with Alzheimer’s disease, the "Help is Here" books offer practical, realistic support for everyday situations.

• Help is Here: When Someone You Love has Dementia is for family caregivers who are caring for a family member with dementia whether they live with the family member or not
• Aquí está la Ayuda: Cuando un ser querido tiene demencia es para cuidadores familiares que están cuidando a un mimbro de la familia con demencia aunque vivan con el miembro de la familia o no. Esta traducción es escrita en lenguaje sencillo y adaptado culturalmente en contenidos e imágenes.
• Help is Here: When a Resident has Dementia is for the staff at senior residences and explains the staff’s important role and how to deal with challenging situations at work
• Help is Here: When a Resident has Dementia Leader Manual is for leaders at senior residences to guide their staff through group learning through Help is Here: When a Resident has Dementia in six, short staff meetings

Here are some of the questions that we discussed:

• Your listeners may be interested to learn how Dr. Hodges and I came to work together. People often are baffled that a doctor and a lawyer teamed up. Yes, we will start with that.  How did a lawyer and doctor come to work together on this project? 
• Dr. Hodges would be happy to talk briefly about what dementia really IS, if you feel like that would be a helpful start. I see that Dr. Lindauer likely talked a little about that, but a refresher at the top of the interview might be helpful. People are often confused about the "difference" between Alzheimer's disease and dementia so it might be good to clear that up.  This is important---need to review what dementia is: causes, early symptoms, age of onset, frequency, treatment(s)… 
• How common is dementia?  How many people in Oregon have it?
• How would I know if someone in my family were coming down with this?
• How would I know if I were coming down with this?
• Tell us about your series:  why you wrote it, how it’s used, how it’s different from other series on this subject, where we can get it
• What’s it like being a caregiver to a family member with dementia?
• Can family members get paid for the care they give?
• How should families plan to deal with this situation?  How do they treat care-givers fairly?  
• When should we hire others (non-family) to do this work?
• Yes, how do you fund this project?  We would like a question about how the Help is Here Project is funded so that we can make clear that we are funded by Providence Foundation, which owns the copyrights to all the Help is Herebooks. Profits, if any (I've never heard that there has been a profit) are returned to the Help is Here Project to fund education for those who care for people with dementia. Dr. Hodges and I make nothing from book sales. 
• You have a Spanish edition.  Tell us about that!  We'd also like a chance to talk a little bit about the new plain language, culturally adapted Spanish translation of Help is Here. It's beautiful! We'll bring a copy so you can see it.
• What does the future hold?  Do you see a cure on the horizon?