Discussion with Author of It's Not That Simple: Helping Families Navigate the Alzheimer's Journey

How Dementia Impacts Families with dementia expert, Pam Ostrowski, Author of It's Not That Simple: Helping Families Navigate the Alzheimer's Journey Learn about: How Dementia and Alzheimer's affect communicating Coping with intra-family dynamics and communications Tips for how to plan for the dementia years 

Featuring Pam Ostrowski, CSA®, CDP®, CEO, Alzheimer's Family Consulting

Power Point: Dementia impact on Families Positive Aging Sourcebook with Steve Gurney.pptm.pdf

Questions Answered:

• I'm hoping you can talk a bit about those who are resistant to help/support/treatment. my mom was recently diagnosed with mild dementia and is resisting every step of getting help so far.
• We hear a lot about how dementia care can be isolating and divisive for friends, family, and even relationships. Where can care partners look to increase their social support?
• Joan  please talk about the drugs which are used to treat dementia
• Pam mentioned "Dementia Certification" and herself is certified. What organizations offer evidence based training?
• With COVID, what recommendations do you have for parents with dementia in Assisted Living which is once again in quarantine?
• Any Suggestions for communication cards or the like for someone with early Lewey Body dementia? I'm working with a hospice patient who can comprehend what people say but struggles to find the words to express her thoughts. What I have seen for communication cards seem very basic for people who have severe memory loss.  Thanks.
• One is the National Council of Certified Dementia Practitioners.
• Help me with some of my calls I have been receiving this week; relating to cost and care, for example I have residents in high end assisted living who pay dearly, however, the care is at all time low.  I have visited for my self and see it going down, what suggestions do you have to help. I remain open for change and believe there is something that can be done.  
• I’ve heard that the more the dementia patient sleeps the more their brain loses more ability to function.  Is that true? Sometimes it seems like my mom would like to sleep all day.
• Don’t hesitate to stay on top of the staff in these communities.
• another factor of oversleeping is medication. facilities have been known to overmedicate.

Chat Transcript: 

12:05:08     From  Stacy Tarter   to   Hosts and panelists : Hello everyone! I live in Sarasota Florida and offer sound healing. I am just beginning to help navigate my Dad’s advancing dementia.

12:05:14     From  Catie Ramos : Catie Ramos with Goodwin House at Home here! If you are interested in aging-in-place and are located in Northern Virginia or DC, we would love to chat with you! www.goodwinhouse.org/age-in-place 703-575-5202

12:05:50     From  Sherry Shapiro   to   Hosts and panelists : Sherry here from shady grove medical center

12:06:00     From  Debbie Sokobin : Hi all, I am Debbie Sokobin with Next Chapter Concierge - Senior Move Management services for individuals and families in the Moco area! nextchapterconcierge.com

12:06:18     From  Joe Sperling : There are more and more programs on TV with dementia as a topic: This is Us is just a recent one.

12:06:54     From  Steve Gurney - ProAging Community : From Stacy Tarter to All Panelists 12:05 PM

Hello everyone! I live in Sarasota Florida and offer sound healing. I am just beginning to help navigate my Dad’s advancing dementia.

12:07:05     From  Steve Gurney - ProAging Community : From Sherry Shapiro to All Panelists 12:05 PM

Sherry here from shady grove medical center

12:08:33     From  Michael Smith : Here is an upcoming even sponsored by the Alzheimer's Association: Bewildered: A Film Screening & Virtual Forum

Thursday, January 20th, 5:30pm (please share; open to public) ZOOM

Join the Alzheimer’s Association for this short film screening followed by a virtual

community discussion about dementia, resources, and caregiving through the

power of music. The film's Director as well as guests from Prince George's County Gov't and Health Agency will be part of this discussion. Invite a friend that has been affected by dementia to participate in our discussion on how we can help people in your community.

Synopsis: Bewildered depicts the journey of a husband and wife who are world-famous jazz vocalists. The film starts at the peak of their career and marriage. We see their

turmoil and anxiety brought on by a spouse’s decline into dementia. Register Here.

12:10:39     From  Ellen Pincus : Hello Ellen Pincus with Silverado Memory Care Assisted Living in Alexandria VA 571-775-9408 ellen.pincus@silverado.com.

12:11:27     From  Austin Caton : Hello, Austin Caton with the Kerr Tar AAA. Family Caregiver Support Program Coordinator

12:12:22     From  Glendon Geikie : Hello from Palm Springs CA. Hospice volunteer and end of life doula.

12:14:07     From  jackie mccord   to   Hosts and panelists : Hello, Jackie Mccord from Adult Day Service Center, Alexandria VA

12:14:12     From  Johanna Truax : Hello from Milford, DE, Johanna Truax from the Pace Your Life program; jtruax@paceyourlifemwv.com

12:15:13     From  gloria Gaddy : I have had hands on with my husband while managing a 220 unit Senior Building.  There is no way to navigate this awful journey without resources and information.  Thank for adding to this journey with this Book.  I will suggest it in my contacts.  GG

12:15:23     From  Joe Sperling : Denial is a very strong force.

12:15:43     From  Joe Sperling : Pervasive.

12:15:55     From  G.J. Hodson : Greetings from North Texas. I'm a caregiver emeritus and independent researcher, as well as board member for the Coalition for Aging LGBT. I know this struggle well; this is great information!

12:17:27     From  Steve Gurney - ProAging Community : It's Not That Simple: Helping Families Navigate the Alzheimer's Journey https://www.amazon.com/Its-Not-That-Simple-Alzheimers-ebook/dp/B08KTSGGSG

12:18:14     From  Tamara Fye : Happy New Year from Eastern TN !!!  Tamara Fye with Aging Family Partners.  Creating Peace of Mind for families of seniors to create balance with  family & work responsibilities with the care of their aging loved one.  Tamara@agingfamilypartners.com  865.630.2800. www.agingfamilypartners.com.  All My Best !!!

12:21:07     From  Michael Smith : For social support and guidance through the Alzheimer's Association: alz.org or for community resources: https://www.alz.org/nca/helping_you/community-resource-finder

12:21:55     From  Steve Gurney - ProAging Community : https://www.brainhq.com/

12:22:25     From  Christy MacCormack : Hi everyone, Naborforce Nabors can come in and help as a second son or daughter with your parents. To help engage and show companionship.

12:23:20     From  Theresa Meehan   to   Hosts and panelists : Does your book address how to work with/ set expectations with memory care staff, as a family member (who happens to also be a healthcare provider)?

12:23:57     From  Steve Gurney - ProAging Community : NATIONAL COUNCIL OF CERTIFIED DEMENTIA PRACTITIONERS  https://www.nccdp.org/

12:24:37     From  G.J. Hodson : The Alzheimer's Association also has profiles and forums for caregivers and care professionals to connect online.

12:24:41     From  Steve Gurney - ProAging Community : Training via Teepa Snow https://teepasnow.com/

12:26:37     From  James MacDonald : Teepa Snow is fantastic!

12:26:52     From  gloria Gaddy : Dementia Friendly America is another great Association - Memory Café- there are many out there and with social media stepping during this pandemic - we are so grateful !

12:26:54     From  G.J. Hodson : Now that so many support groups are virtual, don't be afraid to seek out one specific to your circumstances/community.

12:29:50     From  AnnMarie Riehl   to   Hosts and panelists : Rosalyn Carter Institute offers Dealing With Dementia and its Evidence Based

12:31:34     From  AnnMarie Riehl : jenniferrynbrandt@gmail.com has invited you to edit the following document:

jenniferrynbrandt@gmail.com has invited you to edit the following document:

Rosalyn Carter Institute offers Dealing With Dementia and its evidence-based - designed for the family care partner

12:33:06     From  G.J. Hodson : Research on dementia care is surprisingly spread out, even in academia. I've been collecting evidence-based articles for several years, but I have to draw from many disciplines who don't usually use the same terms in the same way.

12:33:42     From  Camille Adams   to   Hosts and panelists : Hello I am Camille Adams from the Dept. of Social Services thank you for having me

12:34:04     From  joan rubin-kritz : National Council of Certified Dementia Practitioners - www.nccdp.org

12:34:34     From  Steve Gurney - ProAging Community : From Camille Adams to All Panelists 12:33 PM

Hello I am Camille Adams from the Dept. of Social Services thank you for having me

12:35:22     From  Steve Gurney - ProAging Community : From AnnMarie Riehl to All Panelists 12:29 PM

Rosalyn Carter Institute offers Dealing With Dementia and its Evidence Based

12:35:36     From  G.J. Hodson : Please note that these prices vary WIDELY by state/city.

12:36:11     From  gloria Gaddy : Camille are you Dept. of Social Services for Prince Georges County?  If so how can anyone get in contact ? Seems lately it's impossible to get call backs . Gloria

12:37:11     From  Joe Sperling : This reinforces the very strong need for people to get Long-Term Care coverage before its too late.

12:39:33     From  Michael Smith : Its also critical to get an early diagnosis to help with planning financially, legally, care planning and the like. LTC insurance needs to be considered wayyy before someone has a diagnosis, as a diagnosis is a pre-existing condition and disqualifier for LTC!

12:42:08     From  Evelyn Shnier   to   Hosts and panelists : I am a nurse for over 30 years with the last 25 focusing on Geriatrics/Dementia and I own a 16 bed ALF. I have had more than one physician tell me that they believe more harm has come to seniors due to isolation and loneliness than COVID.

12:44:04     From  Joe Sperling : Adult children of people with dementia should get LTC insurance.  Carriers are starting to ask about parents of applicants, and if both have been diagnosed it may be a block to the adult child getting coverage.

12:46:12     From  Evelyn Shnier : I understand that it is almost impossible to get LTC insurance now because the companies have lost too much money. Any policies now are basically just prepaying for care because they are so expensive.

12:46:44     From  Camille Adams   to   Hosts and panelists : From Camille Adams you can tried to contact 301-909-7000 okay try that number have a good day

12:47:18     From  Carol Ragsdale : How much of an issue is/will be the impact of COVID-Omicron on care staff availability? I understand residential facilities are experiencing shortages due to sick staff.  Do you anticipate this will be short-term or create problems in the future?

12:48:10     From  G.J. Hodson : Professional care staffing is deeply impacted by people getting sick, low wage, high demand, and immigration.

12:48:53     From  Steve Gurney - ProAging Community : National Council of Certified Dementia Practitioners https://www.nccdp.org/

12:48:55     From  KAREN DUDLEY : Will we receive the Power point presentations that Pam made for this Webinar.

12:48:59     From  G.J. Hodson : We also recommend people with dementia risk factors get a cognitive assessment as early as age 40; it can be hard to recognize what has been lost if/when MCI or dementia develop if you don't have a baseline to compare against.

12:50:17     From  Theresa Meehan   to   Hosts and panelists : What qualifications to Executive directors have to have to run memory care facilities??

12:53:39     From  Evelyn Shnier   to   Hosts and panelists : I would rather have an aide who has had at least 5 years of hands on care to people with dementia than someone who just has a Certified Dementia Practitioner certification. I also have this certification and I know what is taught in the course.

12:54:12     From  Christy MacCormack : Wow! Thank you1

12:54:41     From  Ellen Pincus : can we get Pam's contact info?

12:54:55     From  G.J. Hodson : It is normal for many types of dementia for a person's quality of sleep to decline BECAUSE of cognitive decline. Let them sleep because they need more hours to get the same results. Also be mindful of sleep hygiene if you are at risk or in loved ones in the earlier stages of MCI/dementia. It has a long-term impact.

12:55:55     From  Ellen Pincus : At Silverado all of our associates are dementia certified. all positions are trained.

12:57:14     From  Steve Gurney - ProAging Community : Pam (pam@itsnotthatsimple.com)

12:57:50     From  Michael Smith : Pam makes a good point- it is critical to be an advocate for your loved one and ensure there are regualr care plan meetings with staff!

12:57:53     From  G.J. Hodson : Thanks for letting me sit in. Steve, you're an adept facilitator in this forum! Look forward to seeing more in the future.

12:58:03     From  Pam : pam@itsnothatsimple.com

12:58:22     From  Ellen Pincus : Thanks so much for this helpful information

12:59:58     From  Steve Gurney - ProAging Community : From Evelyn Shnier to All Panelists 12:53 PM

I would rather have an aide who has had at least 5 years of hands on care to people with dementia than someone who just has a Certified Dementia Practitioner certification. I also have this certification and I know what is taught in the course.

13:01:13     From  Deb Merriner   to   Hosts and panelists : This was very informative! Thank you ! Deb Merriner, Buckley’s for Seniors, Premium Companion Care, Transportation and Care Management, 703.390.0535, www.buckleys4seniors.com

13:01:27     From  James MacDonald : This has been fantastic!!

13:02:15     From  James MacDonald : I’ll be buying the book after the call!

13:02:18     From  Ellen Pincus : Thank you so much!!!!

13:02:29     From  Christy MacCormack : THANK YOU SO MUCH!!!!!

13:02:32     From  Audra Backaitis : Great presentation!

13:02:38     From  Theresa Meehan   to   Hosts and panelists : thanks, very helpful!!

13:02:42     From  Evelyn Shnier : In regard to sleep, the sleep is interrupted frequently during the night so that the senior never gets the 4 hours of uninterrupted  sleep required for REM cycle sleep. There are sanitary garments available that hold a large quantity of urine (1 quart!) without leaking, odor or skin breakdown. This reduces the times that the senior has to be disturbed.