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.