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.
6. The difficulty of and importance of planning
Even though we don’t know what will change when, it’s important to think about the next level of care today. Not only does it give you more choices, its minimizes the stress of having to make decisions in an emergency.
There is LEGAL and Financial planning that includes: Power of Attorney for Health and Finance, Advanced Directives, Guardianship.
There is planning for PRACTICAL SAFETY: that might include Carry “The person I am with has AD/FTD” cards, Enroll in Safe Return ID program, Have A letter written by the neurologist, be watchful of vulnerability financially, Remove Weapons & Power Tools,Driving, Be Aware of ¡Poor Financial Judgment, ¡Financial Scams, ¡Excessive Spending, Hyperorality, Sexual Disinhibition
There is the PLAN FOR when THE PLANS need to CHANGE: Have a back up plan for meals, gatherings, outings. Identify limitations/criteria for when you need more help. Think about the next level of care today so you can access it before a crisis.
7. Tools for moving forward living with ADRD:
Reconciliation of both/and, starting a Gratitude Journal, Practice the S.T.O.P. or G.L.A.D Mindfulness Exercises, Seek Support for yourself, Self- Compassion, Continue to stay connected to favorite memories and make new ones. Be willing to try different interventions. (Don’t assume something will not work)——
8. Optimizing Brain Health
Our practice also helps people diagnosed and families include the Brain health Suggestions into their goals of care/treatment. Research has shown that staying engaged, exercising, staying social, managing mood, getting good sleep and eating well have positive effects on the brain.
Mary O’Hara, LCSW
Licensed Clinical Social Worker
Rocky Mountain Neurobehavioral Associates
3333 S. Bannock St. Suite 435
Englewood, CO 80110720.907.0420http://www.mountainneuro.com