When Laurie Scherrer was diagnosed with early onset Alzheimer’s and frontotemporal dementia, she was told several things by doctors, including advice that she should get her affairs in order. She writes about the eleven things she wished the doctors had said, including the idea that she could reduce confusion and agitation by observing triggers.
This short article from Next Avenue (nextavenue.org) is about anosognosia, or the lack of awareness of one’s own dementia. This is not denial but being unaware. “This lack of awareness can cause major stress and heartache for caregivers.”
Here’s a short excerpt:
Both of Kathy Kling’s parents, who are divorced, have Alzheimer’s. Kling recently talked with her mother, Karen Kelly, about her father’s disease. “Oh, I hope I never get it,” her mother replied. She was diagnosed six years ago.
The full article is here:
When Your Parent Doesn’t Know He Has Dementia
It’s a common aspect of the disorder, but tough on caregivers
By Emily Gurnon, Health & Caregiving Editor
March 28, 2018
Apathy is a common symptom in frontotemporal degeneration (including frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration, etc) as well as other disorders such as Parkinson’s disease and Lewy body dementia. In my experience working with caregivers of these neurological diseases for nearly 15 years, I can say that apathy is one of the most challenging symptoms for caregivers and families.
The Association for Frontotemporal Degeneration (AFTD, theaftd.org) has just published its winter issue of “Partners in FTD Care.” The newsletter, for healthcare professionals, presents an overview of the three components of apathy — initiation, planning, and motivation. A case study is shared of Linda and her caregiver husband Kevin. There is a discussion about what distinguishes apathy from depression.
Additionally, there are lots of strategies provided to manage apathy. And two views of apathy are shared — one from a person diagnosed with frontotemporal dementia and another from an FTD caregiver.
I’ve copied a few excerpts below but the entire newsletter is worth checking out, if you are coping with apathy.
Partners in FTD Care
Association for Frontotemporal Degeneration
Components of Apathy
Three distinct components of goal-directed behavior are initiation, planning, and motivation. Each is supported by a distinct region of the frontal lobe. Apathy may emerge where there is dysfunction of any one of these components; understanding
them may help care providers and families to develop interventions tailored to an individual’s particular needs.
What distinguished her apathy from depression?
Linda’s family doctor ascribed her loss of interest in activities and relationships to depression, despite Linda doing well on the Mini-Mental Status Examination and not presenting as sad or concerned about the changes in her life. Antidepressants did not change her symptoms. She struggled throughout a psychiatrist’s evaluation of her planning, working memory, verbal fluency, and mental flexibility. Her history and executive-function impairment prompted the psychiatrist to order an MRI to investigate further. Prominent atrophy in Linda’s frontal lobe indicated the apathy
was due to degenerative disease rather than depression, and the doctor diagnosed FTD.
How did Linda’s husband cope with her growing lack of motivation and activity?
Kevin found himself frequently overwhelmed and angry that he had to plan and arrange all of Linda’s activities. He found himself thinking that she was sometimes being purposeful and defiant, even though he understood that her changing behavior was a result of FTD. He attended a caregiver support group led by an AFTD-affiliated facilitator where he could talk with others facing similar challenges. Group members suggested structuring her daily activities, and encouraged him to simplify the steps. When his children started to offer advice, Kevin struggled with guilt; he wondered whether he was doing enough for Linda. His doctor suggested he see a psychologist to help cope with his emotions and the stress of caregiving. This helped him continue to manage Linda’s care while acknowledging his own need for support and assistance.
Apathy is among the most challenging symptoms for family and professional caregivers to manage. Effective interventions are individually tailored, rely on environmental strategies, and are delivered with understanding and patience.
Support Positive Approaches
• Reframe apathy as brain-based rather than the result of stubbornness or defiance.
• Develop individualized activities based on needs and interests that motivate and direct the person: spiritual, emotional, physical, nutritional, intellectual, and social. Follow the schedule consistently and adapt the level of difficulty of activities
as abilities change.
• Check your emotions continually and try to maintain a positive tone. People with FTD may have difficulty understanding speech but understand tone of voice and non-verbal communication. Anger and annoyance impede engagement and task
• Practice patience.
• Plan extra time for activities.
• Remember, you cannot change the person with FTD. Concentrate on modifying the environment and the intervention.
• Provide emotional support for family caregivers struggling to engage a loved one. Many feel anger over apathetic behavior, or feel they “aren’t doing enough” for the person with FTD, which adds to caregiver stress.
In CBS Sunday Morning story from today, Dr. Bruce Miller from UCSF describes his work with some dementia patients. He has compared brain scans of dementia patients with those of a child savant:
“We are seeing the same pattern of loss of function on the left side of the brain, [with] increased function in the right posterior parts of the brain, the parts that allow us to take something visual in our mind and put it on a canvas.”
In some dementia patients — so called “acquired savants” — “the disease that destroys some brain areas activates others, unlocking hidden talent.”
Watch the full TV story here:
The story features one patient with frontotemporal dementia.
The NIH (National Institutes of Health) hosted a two-day summit in October 2017 on research that is needed to improve quality of care of persons with dementia and their caregivers. The summit was streamed live. The summit was of most interest to those involved in research. Only a few useful ideas were shared, including the DICE approach, which we’ve heard about previously. It is an approach to responding to difficult behaviors.
Describe – the who, what, when and where of situations where problem behaviors occur (the physical and social contexts)
Investigate – current dementia symptoms, medications, sleep habits, etc. that may be contributing to difficult behavior.
Create – a plan to prevent and respond to difficult behaviors by changing environment and educating the caregiver.
Evaluate – how well the plan is being followed and how it is working. Make necessary adjustments that work for the family.
Recently, Laurie White, a social worker in the North Bay, sent me a copy of her excellent guide for family caregivers on “Coping with Behavior Change in Dementia” (dementiacarebooks.com). (The book is to be shared within our local support group.) Basically, this is a handbook to implementing the DICE approach. Laurie and co-author Beth Spencer begin by saying that the family caregiver must become a “detective” to understand the cause of these behaviors. They address coping with the 4As – anxiety, agitation, anger, and aggression – among other problems. One guide book gives lots more helpful ideas to dementia caregiving than an entire two-day NIH conference!