Dementia Resilience with Jill Lorentz

Hi Friends - Today, September 10, 2019 is a show to think about memory loss and cognitive impairment in a new way. So often we just see what the person has lost, and how we are going to work with the symptoms we see on a daily basis. What if you looked at this from the perspective of - how would you see the disease if you were looking at it through your own lenses? I have a thought provoking show to day to help enlighten us to see this world in a new light!

Today I had a wonderful coffee chat with Mary O'Hara, a Licensed Clinical Social Worker with the Rocky Mountain Neurobehavioral Associates. Her knowledge of FTD gives great insight into new ways to think about communicating with someone living with this difficult disease.

1. The Work We do

RMNBA is a small private practice where we focus on support and care for those with neurological conditions. We are a team of a speech therapist, 2 social workers and a neuropsychologist. I came to this work after seeing the need for greater support for people and families living with these conditions. 

2. The experience of the Person with ADRD

A person with a new diagnosis of ADRD can experience a range of emotions. For those who are aware, Often they describe a feeling of losing their sense of self, their fears about the future, the changes in their relationships, their independence, and difficulty with accepting the diagnosis and accepting help in certain areas and finding a way forward living their best life with it. 

Eventually, they can no longer participate in meaningful therapy but in the early stages for someone who is struggling with the changes, it can be a place to process the changes, their grief, and try new tools to manage their anxiety, and focus on their own strengths and what remains. 

It’s important to note that Some people are not aware of the changes and it can sometimes be difficult for families to navigate this. 

3. The experience of the Family

Families can also experience a range of emotions- Grief, Guilt, Loss, Anger, Shame, Frustration, Fear, Sometimes resentment, stress, anxiety, depression, being overwhelmed by what to do next and how to best help. They are often faced with making difficult choices that are for the person’s wellbeing and safety  but are perceived as controlling or worse heartless and cruel. They constantly are challenged with Balancing safety with independence. 

Caregivers are not recognized in our society but they are lifelines for people with ADRD. There is So much we can’t see that family caregivers experience: Ambiguous Loss & Unrecognized Grief, a Chronic State of Stress, Anxiety & Loss, Blame and Anger projected at them, Every change usually means CG take on more. We also do not see the energy and thought required to:¡Keep things “Normal”, Keeping someone Safe, Staying 5 steps ahead. 

Caregiver Identity Theory- The point at which the family relationship gives way to a caregiver relationship and puts the CG at risk for burn out and person at risk for NH placement. 

4. Helping Families Cope

It’s so important that families know that they are not alone. There are others who understand and there are resources that can help.  

Since communication changes so much, they also have to learn to speak differently. And learn not to take words/behaviors personally. They have to learn not to engage in an argument. They also need to find new tools to help stay calm in difficult moments and increase their tolerance of uncertainty, and ambiguity.  

5. We also have experience supporting people/families with the more rare forms of Non-Alz Dementia such as FTD and PPA

Some symptoms include Anosognosia – (lack of awareness), Disinhibition, Apathy, Loss of Executive Function (planning, judgment, reasoning), Loss of Empathy (self-centered), Utilization Behaviors, Hyperoral Behaviors, Hypersexual Behaviors, Obsessive-Compulsive or Ritualistic Activities, Perseveration. 

August 27, 2019, This show tackled the subject of how to prepare and conduct a Care Plan meeting with the provider who facilitates care for your loved one. This could include the doctor, care community, home care, group home and others. I will provide practical help on the questions to ask and a comprehensive process for a productive meeting.

August 19, 2019, My guest today is Dr. Samantha Holden from University of Colorado Hospital. She is an Assistant Professor of Neurology and a highly respected physician working with Lewy Body and Parkinson’s dementia’s. We have a wonderful coffee chat about these diseases, how they are related, diagnosed and new bio markers concerning both. A fascinating conversation with an extremely talented and caring doctor!

Dr. Samantha

Assistant Professor of Neurology

Director, Memory Disorders Clinic

Associate Fellowship Director, Behavioral Neurology & Neuropsychiatry

Site Co-Principal Investigator, Lewy Body Dementia Association Research Center of Excellence
University of Colorado School of Medicine

August 12, 2019 is a Strategy Show – Calming Difficult Behaviors! How do we calm someone who is agitated, anxious, or having delusions? These are difficult behaviors and I have the answers to help with these issues and more!

August 5, 2019 – I feel like this is one of my most important podcasts, as I share quotes from people with memory loss and cognitive impairment regarding what it is like to live with issues and activities of daily living. Their candid thoughts provide enormous insight into what it is like when you have trouble remembering, make mistakes, lose items, have trouble dressing, setting the table, seeing items, repetitive questions and much more!

I had a fantastic conversation with three Home Instead Denver North caregiver’s where we discussed some of the hardest issues with bringing a caregiver into your home. What if your loved one won’t accept the care, or let them into the house? What if a spouse gets in the way of activities? We explore these questions and more!

This is a difficult show for me this week. I have reached a place where I am angry and frustrated, just like all of you, that the dementia rollercoaster never seems to end for my family. Younger onset, meaning before age 65, is prevalent in my family. My mom, age 56, my brother age 56, now others in my family are showing signs, again at young ages.

I am in a support group on Facebook where people find they have Alzheimer's as early as 24 years old. The entire group is part of the DIAN study for younger onset. This is a study that is worldwide and all of these brave people are involved in a research trial to try to end this horrible disease. I hear heart breaking stories like a mom with 5 kids ages 17-34 and all have Alzheimer's, passed down through their father who just passed away at age 52. I hear how nobody in some families ever reach old age.

I teach classes for people with Alzheimer's and Parkinson's (PD) and I feel for my PD friends as well. They will get rest tremors in their 20's. Talk about unfair. I love all my people out their so much and I pray for all of you often.

Eight people in my family have had some type of dementia. I am really sick of it. There I said it! It pisses me off and I want off of this ride. I never asked for it, no one did. I've centered my life around helping people live with this disease and just for today, I am screaming to the roof tops that I am tired. I will get back in the game tomorrow, after I throw myself on my bed and cry for an hour...I'll see you all again soon.

July 1, 2019 my guest was the Executive Director of the Colorado Alzheimer’s Association, Amelia Schafer. We discussed Annabel Bowlen, wife of pat Bowlen, Owner of the Denver Broncos. Annabel disclosed her recent diagnosis of Alzheimer’s disease and we admired her courage and willingness to be a face behind the journey of Alzheimer’s. We also discussed the 7 research projects the Colorado Association is funding around the world that appear to be promising.