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FTD Support Group Leader Continuing Education Creative Approaches to Self-Care in FTD: A Conversation with Geri Hall, PhD, ARPN September 23, 2013
FTD Support Group Leader Continuing Education
Creative Approaches to Self-Care
in FTD: A Conversation with
Geri Hall, PhD, ARPN
September 23, 2013
AFTD is Mission Driven
Promote and fund research
Provide information, education and support
Educate physicians and health professionals
Increase public awareness
Advocate for LTC and social services
Facilitate the international exchange of ideas
We envision a world where frontotemporal degeneration is
understood, effectively diagnosed, treated, cured and
ultimately prevented.
Today’s Speakers
Geri Hall, PhD, ARNP
Clinical Nurse
Specialist, Banner
Alzheimer Institute
Matt Sharp, MSS
Program Coordinator
AFTD
Symptoms vs. Behaviors
Self-care issues in FTD -- especially bvFTD-- differ significantly from those encountered in Alzheimer’s disease (AD). While behaviors are a secondary part of AD, they are the main symptoms in bvFTD. Trying to adapt care from books or lectures on AD, caregivers soon realize the care is different, yet there are few FTD specific guides available. Moreover, because symptom presentation in bvFTD varies widely what works for some may not work for all. Thus managing problems with self-care follows some basic goals, it is largely the results of trial, error, and suggestions from knowledgeable allied health professionals and other families dealing with FTD. The purpose of this presentation is to have a dialogue about common issues encountered by participants, and discuss suggestions for care, and why they might or might not work.
Symptoms vs. Behaviors
Target interventions at secondary behavior. Symptoms of disease cannot be stopped or changed
Early Symptoms / Behaviors Moderate Symptoms / Behaviors
Changes in emotion Inability to reason
Loss of social “filters” Inattention to personal care
Loss of empathy
Disengages from and objectifies others
Compulsive thoughts and behaviors
Develops “the stare”
Obsessive and rigid behaviors May display anger/aggression
Apathy Compulsive repetitive behaviors
Loss of sense of risk or danger Decreased initiation of productive behavior
Disorganization Decreased understanding of social boundaries.
Disinhibited behaviors Loss of impulse control
Lack of insight into the changes or problems Incontinence of bowel/bladder
Diminished in speech production (in bvFTD – earlier in PPA). Motor Problems (earlier in movement disorders such as PSP)
Bathing and Grooming
Symptoms to consider Early Symptoms Moderate Symptoms
Lack of insight – no matter how many people tell the person he/she needs a bath the person cannot understand despite
Inability to reason
Apathy –When not involved in compulsive behaviors the person may sit, staring, not caring whether he/she interacts with family and friends, neglecting personal hygiene
Inattention to personal care
Development of obsessive and rigid behaviors – Obsessions can include following rigid schedules for laundry, housework, and other activities related to self-care. Can also compulsively eat food items (especially sweets) leading to complications with oral care / hygiene
May display anger if his/her demands aren’t met immediately. The person may become verbally aggressive.
Clothing and Dressing
Symptoms to consider Early Symptoms Moderate Symptoms
Disorganization – personal item s may be in chaos Inability to reason
Loss of social “filters” The person has decreased initiation of productive behavior and is unable to plan and organize any activity except for those that are compulsive.
Apathy May display anger if his/her demands aren’t met immediately. The person may become verbally aggressive.
Walking and Movement
Symptoms to consider Early Symptoms Moderate Symptoms
Apathy –When not involved in compulsive behaviors the person may sit, staring, watching television without being involved with the program, not caring whether he/she interacts with family and friends, neglecting personal hygiene
There may be problems with a motor apraxia – programming the parts of the body to complete a task.
Loss of sense of risk or danger – doing things that are unsafe or could be unsafe with others including bicycling into unsafe areas. or doing physical stunts near grandchildren
Compulsive repetitive behaviors are common: such as eating constantly, roaming, watching a particular television show over and over
The person has decreased initiation of productive behavior and is unable to plan and organize any activity except for those that are compulsive.
Toileting
Symptoms to consider Early Symptoms Moderate Symptoms
Loss of social “filters” & Disinhibited behaviors can include having spontaneous bowel movements when is highly stimulating places such as the supermarket.
In the moderate stage the person develops urinary incontinecne due to disinhibited bladder and/or bowel. Unlike AD where incontinence occurs in advanced disease and starts with urinary symptoms, the person with FTD often develops bowel accidents quite early – usually in response to a high stimulus or stressful situation.
Development of obsessive and rigid behaviors – Obsessions can include repeatedly going to bathroom regardless if they need to urinate / defecate
Inattention to personal care – including not being aware that person has defecated / urinated in clothing
Lack of insight into the changes or problems
There also may be signs of problems with a motor apraxia – programming the parts of the body to complete a task.
Eating
Symptoms to consider Early Symptoms Moderate Symptoms
Loss of social “filters” & Loss of empathy – can make meal times unpleasant
Compulsive repetitive behaviors are common: such as eating constantly
Development of obsessive and rigid behaviors can include fixation on single food items and eating routines
The person has decreased initiation of productive behavior and is unable to plan and organize any activity except for those that are compulsive.
AFTD: Support Encourages Strength
HelpLine (office, toll-free #, or email)
AFTD phone groups (parents, PwFTD)
FTD support groups
Caregiver Connections
FTD Education Conferences
Respite and travel grants
NEW: AFTD Kids and Teens
Website
AFTD Kids and Teens -
Explore, Learn, Connect
Reliable Information
Coping Strategies
Kids/Teens Like Me
Stories/Poems
Art
Video diaries
Activities/Get involved
Ask A Question
URL: www.AFTDkidsandteens.org
Email: [email protected]
AFTD 2014 Education Conference Friday, March 14, 10:00-6:00
Reception to follow
Dr. Edward Huey, Columbia,
Clinical Speaker
Robert Bazell, formerly of NBC,
Keynote Speaker
Thurs, March 13, 7:30 pm
Informal gathering of FTD
support group leaders
www.theaftd.org for info.
White Plains, NY
Partners in FTD Care
Education for healthcare professionals
• Introductory materials (cases, handouts, DVD)
• Quarterly newsletter - case study, “What to do
About...”
• Interactive YahooGroup – now open to family and
professional caregivers
• Focus on interventions/strategies to issues
A Focus on FTD Care and Cure
AFTD creates:
• A community of and for those affected
• A hub for cross-disciplinary collaboration
• Opportunities to get involved
• Change
http://www.theaftd.org HelpLine: 866-507-7222
