Creative Approaches to Self-Care in FTD: A Conversation with Geri Hall, PhD, ARPN

Transcription

1 FTD Support Group Leader Continuing Education Creative Approaches to Self-Care in FTD: A Conversation with Geri Hall, PhD, ARPN September 23, 2013

2 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.

3 Today s Speakers Geri Hall, PhD, ARNP Clinical Nurse Specialist, Banner Alzheimer Institute Matt Sharp, MSS Program Coordinator AFTD

4 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.

5 Symptoms vs. Behaviors Target interventions at secondary behavior. Symptoms of disease cannot be stopped or changed Early Symptoms / Behaviors Changes in emotion Loss of social filters Loss of empathy Moderate Symptoms / Behaviors Inability to reason Inattention to personal care Disengages from and objectifies others Compulsive thoughts and behaviors Develops the stare Obsessive and rigid behaviors May display anger/aggression Apathy Loss of sense of risk or danger Disorganization Compulsive repetitive behaviors Decreased initiation of productive behavior 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)

6 Bathing and Grooming Symptoms to consider Early Symptoms Lack of insight no matter how many people tell the person he/she needs a bath the person cannot understand despite Moderate Symptoms 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 selfcare. 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.

7 Clothing and Dressing Symptoms to consider Early Symptoms Disorganization personal item s may be in chaos Moderate Symptoms 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.

8 Walking and Movement Symptoms to consider Early 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 Moderate Symptoms 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.

9 Toileting Symptoms to consider Early Symptoms Loss of social filters & Disinhibited behaviors can include having spontaneous bowel movements when is highly stimulating places such as the supermarket. Development of obsessive and rigid behaviors Obsessions can include repeatedly going to bathroom regardless if they need to urinate / defecate Lack of insight into the changes or problems Moderate Symptoms 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. Inattention to personal care including not being aware that person has defecated / urinated in clothing There also may be signs of problems with a motor apraxia programming the parts of the body to complete a task.

10 Eating Symptoms to consider Early Symptoms Loss of social filters & Loss of empathy can make meal times unpleasant Moderate Symptoms 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.

11 AFTD: Support Encourages Strength HelpLine (office, toll-free #, or ) AFTD phone groups (parents, PwFTD) FTD support groups Caregiver Connections FTD Education Conferences Respite and travel grants NEW: AFTD Kids and Teens Website

12 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: kidsandteens@theaftd.org

13 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 White Plains, NY for info.

14 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

15 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 HelpLine: info@theaftd.org