House to Home Relocation Interview with Cate McCarty, Ph.D., The Dementia Coach, Clearwater, Florida, April 2, 2012
1. What makes a dementia coach different from a Geriatric Care Manager?
A dementia coach specializes in dementia dynamics solely while a geriatric care manager works with a range of elder health issues. The term coach is used to indicate the breadth and scope of roles the coach has played in the dementia arena. A dementia coach validates and encourages each member of the family care team with health and happiness as the short and long-term perspective.
Much like a Geriatric Care Manager, a dementia coach develops a game plan to address the needs of the individual as well as the caregiver. Much like a Geriatric Care Manager, I suggest the use of community resources specific to the needs of the caregiver and recipient. Because dementia caregiving leads to a higher rate of health decline to the caregiver than other disease caregiving, I assess both caregiver and care recipient. Once the game plan is in action for a time, re-assessment is done and an updated plan formulated.
2. How did you develop your practice as a Dementia Coach?
I started working with individuals with dementia in a rural nursing home in the 70’s. I was 16, working as a nursing aide before there was any certification or training. The hardest part was the number of people who were vegetative in late stage dementia with little to no stimulation. This led me to training in activities and recreation. Most of my 35+ years in dementia care has been from the recreational perspective and in long-term care, mostly nursing homes. Federal regulations require the activities director to spend a specified amount of one-on-one time providing stimulation to late-stage, end-of-life residents. This expanded not only my understanding of working with what remains but also my commitment to the psychosocial health of the individual. Quality of life through the end-of-life became my mantra. The end-of-life experiences prompted my study of Thanatology, completing my Master’s degree at Hood College. I then received my doctorate in Aging Studies with a focus on end-of-life care for individuals with dementia. As a nation, we have come a long way from our 70’s approach to end-stage care, but we have not come nearly far enough. My commitment is to use my training and passion to advance psychosocial health for individuals with dementia and their caregivers.
3. Describe the types of dementia, the importance of early recognition and of consulting with a specialist.
Dementia is a symptom; it is the umbrella term used to describe mental confusion. There are many forms of dementia, some reversible and some irreversible. If your loved one’s confusion is very sudden, it is best to get an appointment with your primary care physician as quickly as possible. Urinary Tract Infections (UTIs) are common and often result in sudden confusion, delusions, erratic behavior. This is a reversible dementia that is quickly gone with antibiotics and hydration. Other reversible types of dementia include intoxication, nutritional/metabolic disorders, head injury, brain tumor and anemia. Let your primary care physician determine what specialist and test may be needed.
If your loved one’s dementia has “crept up” over time, perhaps in hindsight you see he/she has been losing track of routines and is doing so increasingly, you should consult with a specialist, either a neurologist or an assessment team that includes a neurologist. Local assessment options include USF Health, Byrd Center, Morton Plant hospital, Sarasota Memorial and the Geriatric Assessment Program at Menorah Manor. Non-reversible dementias include Alzheimer’s Disease, Lewy Body’s, vascular dementia, Pick’s and Huntington’s disease to name a few. Because of the wealth of healthcare providers we have in our locality, you should always pursue a specialist to get the best diagnosis, plan of care and overview.
Ignoring the changes in a loved one’s mental processing or denying the changes will keep you and your family from accessing the help available in the time needed. The journey is much easier when you acknowledge the route and prepare accordingly. A dementia coach can help you access the resources you need and provision your family for the trip. Too many hospitalizations and Silver Alerts are the result of ignoring or denying the changes you are noticing.
4. How do you have a conversation with the family in terms of family support and caregiver stress?
My initial conversation with family allows me to hear who the key members of the caregiving team are and what their overall resource needs are. This conversation cannot happen too soon. There are many resources in our community, but often a family looks for them too late. A personal example, when my mother in law was willing to consider an adult day program, it was too late for Dad to attend easily. Getting him on and off the bus, getting him to come home—all would have been easier had we accessed the resource sooner. Often the caregiver, particularly the spousal caregiver, waits until the stress is affecting their health before they ask for help—even family help. This delay works against the individual with dementia’s health, the caregiver’s health and the family’s health. There are community resources and in-home resources that are useful from the first diagnosis.
5. How do you advise when it’s time to place someone with Alzheimer’s in a specialized living community, or how do you counsel family about caregiving for a loved one at home?
Caregiving for a loved one with dementia can be like the story of the boiling frog. It is a parable, not a real story. If a frog is placed in a pot with a little water and the heat under the pot starts low and increases slowly, the frog will not know to jump out before it’s too late. The stress of caregiving for Alzheimer’s is worse than the stress of caregiving for many other illnesses, the decline is slow, progressive and the disease course is years long. If the caregiver does not access resources early, when the heat feels subtle, the result can be fatal for the caregiver—63% die before their loved one with Alzheimer’s disease. Like the frog, the impact of the stress is not realized until too late.
On the alternate side of the caregiving duo – research shows that a care environment needs to encompass more than cleanliness and safety. Therapeutic activities have been shown to improve behavioral symptoms and slow cognitive decline. Are you able to provide engaging activities to your loved one? Are these activities specific to his/her life preferences as well as appropriate for the level of his/her cognition? I can assist in adding enriching activities that will meet these psychosocial needs. As a family caregiver myself, even with two other adults in the household, we were only able to provide Dad with cleanliness and most of the time safety. We did not have the time, the organization or the energy to do much more. Years later and as a non-family member, I have the time, the team and the training to offer a family the resources to make the journey less stressful and more enriching. This disease is not a solitary pursuit. We are surrounded by resources that can assist. Adult day programs, in-home activity plans, wonderful memory communities. Placing a loved one in a care community is one resource that can slow down the stress. You are still the lead caregiver but you will have added a crew of other caregivers for the journey.
Recently a prominent businessman killed his wife and committed suicide. His wife had an Alzheimer’s diagnosis for the past six years. In the past, he had written in the New York Times of his belief that he was the only designated caregiver. No other would suffice. He had financial resource but for some reason decided there was only one way to be a good caregiver. I don’t know if he accessed help, but his writing spoke of pride and determination. Two lives are lost. Community and family are left feeling guilty and embarrassed.
To borrow a phrase, “It takes a village”. Reach out and accept guidance and navigation tips from folks who have completed or are on the journey. This journey has many moments of pure joy, accessing resources and accepting help can magnify that joy.