Living with FTD Symptoms and

Behaviour

Melissa KettleAFTDA National

Coordinator

Objectives

• Understand the links between FTD related brain damage, disabilities and behaviour

• Highlight non-pharmacological behavior assessment & modification approaches using CAUSED model

• Overview of appropriate responses, resources and support options

• AFTDA and promotion of upcoming FTD events

Partner logo here

FTD Carer Support Groups

• Established 2010• Monthly meetings• Clinician facilitated but carer driven discussion

• Longitudinal support & knowledge transfer

www.theaftd.org.au or email: melissa.aftda@gmail.com

No magic pills, quick fix or one size fits all solutionsLimited studies, weak evidence

SSRI’s (e.g.. Citalopram or Paroxetine)• disinhibition • compulsions• carbohydrate cravings • hyper sexuality due to effect on libido

Tetracyclic Anti-depressant (Trozadone)• irritability/agitation• depressive symptoms in PPA• eating and sleep disorder (Flebert et al 2004)

Mood Stabilisers (Na Valproate/Tegretol) • aggression/hyper-agitation

TauRx: (BV) FTD treatment trial underway at 3 major FTD centers in Australia

What C.A.U.S.E.D the Behaviour?

CommunicationActivityUnwell/Unmet NeedStoryEnvironmentDementia

The person with FTD

StoryPersonal and Family history preferences

Inner world

Impact of the Dementia

UnwellHealth and Wellbeing

Tasksand

Activities

EnvironmentPhysical and Social

S.Aberdeen, S. Leggat and S. Barraclough et al 2010

Communication

Manifestations of Aggression

Insults

Verbal Threats

Threatening Gestures

Hitting Shouting

Kicking

Biting

Pinching

PushingThrowing

ThingsSexual

Aggression

Aggression Prevention

Understanding and adjusting to

disabilities

Aggression in FTD

There is no point in trying to rationalise with someone once they have lost capacity to do so due to:

• Reduced insight/judgment• Lowered stress threshold • Emotional regulation

problems

Likely to just result in escalating distress, resistance and tensions

• Loss of emotional range/regulation• Loss of emotional recognition• Loss of social norms• Loss of empathy

Impacts of FTD on social cognitionand relationship discourse

Most prominent in BV FTD and SV FTD

Communicate to de-escalate

• Don’t over-verbalise, especially where there are language symptoms

• Avoid rationalizing, correcting & arguing back• Don’t persist/nag…where possible try again later• Avoid challenging statements “you can’t” or “why did you do

that?”• Validate the feelings: “I can see why you’re frustrated” • Calm and moderate tone (mirroring)

Agrammatical / Apraxic speechPerhaps adjust the focus from grammatically correct speech to getting meaning across• Speech Pathology intervention

It’s a lovely d…du….

Day? You can say day. Just try it!

It is! Should we go for a walk outside?

• Before stepping in to take over or deter the person from ritualistic, perseverative behaviour or an activity they may not be managing well….ask yourself; “How important is it?” CHOOSE YOUR BATTLES

• Use delay “let’s take some time out to cool off”

• Remove yourself “I’m sorry…lets take a timeout”

The impact of carer approach in behaviour modification

Remember dignity of risk

Do you want to be right or do you want to be

happy?

Prevention of Assault Modifying ActivityApproach

Remember Personal Space

Gain attention

Engage, explain, demonstrate

Position during re-direction

Don’t persist when the person becomes agitated, stop and try again later

Position during care delivery

Modifying Personal CareActivity to Prevent Resistive Aggression

www.bathingwithoutabattle.org

www.confidentcare.com.au

Redirection through Activity:Learn :• when/how to apply the ‘brakes’ to behaviour• how to re-direct utilisation and perseverative behaviour in to

repetitive purposeful tasks

• how to interrupt and re-direct the misfiring circuitry with auditory cues (touch, voice, music with headphones, singing, alarms, interactive toys, recordings)

• not fight battles over harmless rituals

Causes Related to Physical Symptoms or being Unwell

For example:• Delirium. • Discomfort, including pain• Illness and infection • Drug interactions and

side effects• Sensory deficits/hypersensitivity• Paranoia, anxiety, depression or hallucinations.

FTD Symptom ExpressionInfluence of

Life Story and the Internal World

Manifestationsof Apathy in FTDAffectiveIndifferenceMay report lethargyDon’t identify as ‘depressed’

Behavioural Reduced InitiationReduced planning

CognitiveInactivation of goal directed thought processingPoverty of SpeechLoss of feedback about performance (no cue for action)

ApathyReduced initiation Reduced planningReduced attentionReduced insight

Strategies:Taking over “starter motor” functions• Structured daily routine /timetable• Visual cueing • Starting the task/activity yourself (physical demonstration)• Reducing length of interventions/activities• Task grading/breakdown• Reward systems for task completion• Adjust our own expectations

Poverty of speechInitiate conversation

Promote engagement with pictures, music or topics that are meaningful to the person

Accept limitations, adjust expectations and interact non verbally through activity, touch, gesture

Poor insight, problem solving and planning• Prompt the person with FTD to initiate & sequence tasks

• Assess decision making capacity and considerneed for substitute deciders(Advanced Care Planning, Financial/Medical POA, Guardianship)

• Driving Assessment

• Financial and support service

• Occupational Assessment(ADL’s, work capacity and community safety)

• Problems with set shifting • Perseveration• Utilisation Behaviour• Compulsive/ritualistic behaviours

Disinhibition and Impulsivity

Hyper-sexuality in FTD

• This is brain damage related behaviour not predatory

• Manage environmental cues/signals

• Firm but polite limits for unwanted sexual advances/comments

• Proactive hand occupation during personal care

• Use diversion or offer privacy and options for sexual release

• Offer sensory alternatives to divert from more sociallyinappropriate sexual behaviour (later stages)

• Pharmacological intervention last resort only where serious unmanageable risk identified

Sexual Changes in FTD

Report distress & risk in this domain

Are both partners willing to continue a sexual relationship?Exploring boundaries

Can the need for intimacy/sex be met in other ways?

Counselling for grief/loss in this area

Seek advice to help re-navigate this part of their relationship and manage any risks/distress associated with hyper sexuality and/or disinhibited sexual behaviour

Call Dementia Behaviour Management Advisory Service1800 699 799

Managing Environmental CuesGluttony and Hyper-orality

• Control portions sizes• One item at a time• Ready access to sweet healthy snacks

• Reduce visibility/ access toother food/alcohol

• Alcohol/cigarette substitution• Alternate safe oral stimuluse.g.: lollipops, chew toys Chew pendants can be

purchased on autism websites

Impulsive/compulsive spending and vulnerability• Assess decision making and money

handling capacity (OT)

• Reduce access to large

amounts of funds if vulnerable

• Reduce cues for impulse spending

• Consider OT ax of work place financial roles

• www.donotcall.gov.au• mail re-direction and no junk mail

Pacing and Intrusion

Visual cues

Enabling wandering through Environmental modification:

• Community safety assessment

• Security• Bed and wandering alarms &

GPS tracking• Respite workers,

volunteer visitors and family support Google:

Broda Glider Chair

Partner logo hereSupporting families affected by Behavioural Symptoms of FTD

• Disinhibition• Obsessions/Rituals• Impulsiveness• Perseveration• Aggression

FTD companion cards avail from Alzheimer’s Australia 1800 100 500 or DBMAS

Dementia Behavior Management Advisory Servicewww.dbmas.org.au or 1800 699 799

Extreme risk behavior: 000 or Local mental health service

What can’t be changed?

What can be changed?

FTD brain changes and related disabilities

No cure (yet)

Limited pharmacological options for symptom management

Underlying personality traits

The life story of the person with FTD and how this has shaped the person with FTD’s internal world

Our knowledge and skills

Our attitudes and thinking

Our communication

The way in which tasks are approached

The environment (Physical/Social)

Our understanding of life story to inform motivations for

engagement and behaviour

Partner logo here

Online FTD Support Forum for people with FTD and Caregivershttp://www.ftdsupportforum.com/

Online FTD Support Forum for Spouse Caregivershttps://groups.yahoo.com/neo/groups/FTD_Spouse_Caregiver_Support/info

http://www.theaftd.org/

Partner logo here

Supporting people with Language and Oro-motor changes in FTDEarly Speech Pathology Referral

• Diagnostic characterisation of language changes• Communication techniques (client/carer)• Communication Aides and Devices• Word re-training – Semantic Dementia• Swallowing assessment and MND screen

www.aphasia.org.au

PPA Groups

• Educational – learning about aphasia/dementia• Conversation group• Computer and iPad practice• Themed (game show, cooking)

• Websites:– http://www.adleraphasiacenter.org/– http://www.aphasiacenter.org/– http://www.ukconnect.org/about-aphasia.aspx– http://www.ppaconnection.org– http://groups.yahoo/group/PPA-support

Younger Onset FTD

Alzheimer’s AustraliaYoung Onset Dementia Key Worker Programhttps://fightdementia.org.au/support-and-services/services-and-programs-we-provide/national-younger-onset-dementia-key-worker-program

• Family Education, Counseling and Support• Assistance with financial and occupational stressors• Point of contact (help to navigate support systems,

National Disability Insurance Scheme eligibility, ACAS & age appropriate support and activities groups)

Helping Australians with dementia, and their carers

Partner logo here

Save the Date:

• World FTD Awareness Week25th Sep – 2nd Oct 2016

• How to participate in awareness and fund raising?

• Details will be posted from July 2016www.theaftd.org.au

Thanks for listening

www.theaftd.org.au