docSexuality and Intimacy - Alzheimer Society of Canada
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Sexuality and Intimacy - Alzheimer Society of Canada
What do we know? Not much written or available Sexuality and Intimacy AND Dementia - Edna Ballard – Sexuality & the Alzheimer’s Patient – 1993 – mostly on couples and home setting - Sherman & Kingsley – Sex, Intimacy, and Aged Care – 1998 – England – a chapter - Three Videos available – 1991, 1995, 2001 – Isn’t It Time We Talked? one on intimacy, one on inappropriate behaviors, one on protecting rights and safety - One Tool Kit – produced in Canada - 2002 © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Eight Cases Bob & Sally Collins - What do you think? - - What is happening? - Married 60 yrs – moved in recently due to dementia of husband & increased elopement attempts - What Should be done? 82 yo male & 75 yo female - Wife prefers to do his personal care – she argues that he is able to do more he tries – she doesn’t want other women to touch him - Kids have not been able to change mom’s mind - They are often found in the same bed during night time checks © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. John Jones & Mary Smith Harry Mason - 82 yo male & 79 yo female – both with Alzheimer’s mid disease - 63 yo male – Pick’s disease – few words & poor understanding – impulsive - Wife died 9 years ago – Husband still alive - Tries to touch female caregivers when doing ADLs – puts hands in pants – unzips and urinates in hallways/corners - No h/o aggressive or sexual issues for either - Recently began approaching each other – they like to sit & cuddle, hold hands, kiss, walk together – She calls him by husband’s name & he calls her “sweetheart” - Likes to give ‘bear hugs’ to all females - Wife reports no h/o problems – although she is frustrated/embarrassed by his behaviors and yells at him - She becomes angry - hits husband if touching - John gets upset that she is upset © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 1 Sarah Holt Don Gallo - 79 yo widowed retired school teacher - 32 yo married male s/p head injury - Iraq - Mid-late disease – limited skills - Bed/chair bound – dependent in all care & mobility – R side paralysis - Approaches other females asks for a kiss & holds hands with any female – ignores males - No immediate family – niece POA - Emerges nude from room in middle of night and early AM – tries to get in other’s beds - He makes multiple sexual comments & attempts to touch and grab caregivers throughout care whether family is present or not - He becomes very agitated - mouth care, perineal care, and finger sticks © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Frank & Myrtle Booth Fred Harper - Married 60 yrs – both are in their 80s - 75 yo with Lewy Body Dementia - Frank has signs of beginning Alzheimer’s - Reports that staff – are sexually attacking him at night & grabbing his “privates” when they help him - Myrtle is mid-late disease - Frank wants to continue having sexual relations with Myrtle on a 3-5/wk basis - She cries and tries to get away from him when he approaches her but gets quiet when they are in their room - He wanders the building at night – trying to enter rooms – calling for his wife – dead for 7 years - Retired priest © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Barbara King Why Is ‘It’ An Issue? - 72 yo divorced female – 3x - Dementia can slowly change ‘everything’ - Retired lawyer – no HC PoA - Lose ability to separate – public/private - h/o sexually active lifestyle - It is not a topic most older adults are comfortable bringing up - Early in Alzheimer’s – very impulsive in speech and action - It is very personal – value-laden - Uses sexually explicit words/comments - It can break families & friendships - One daughter wants to support past - It can create a ‘placement’ problem - One daughter wants it stopped - It can affect care dramatically - It can be life-threatening © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 2 Additionally… Ethical Issues - Ethical Issues - - Legal Issues - Multiple Points of View & Value Systems - Complex!!!!! Autonomy Dignity Equity Justice Beneficence Non-Maleficence Safety Privacy © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Legal Issues Social Expectations Health Care Proxy Sexual Abuse Sexual Harassment Sexual Exploitation Sexual Orientation Life-long patterns Disease Alterations © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Dementia Related Issues - Competency - Diagnosis Other residents & their families - Incompetence - Type Staff - Guardianship - Progression Status Administrators - Health care POA - Communication Skills MDs, NPs, PAs - Durable HC-POA - Historic versus present function Regulatory officials & preferences Law enforcement personnel - Advance Directives - Spouse role/ideas & other family Legal system © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Dementia vs Other Changes - Normal changes = more forgetful & slower to learn - MCI – Mild Cognitive Impairment = DEMENTIA - Immediate recall, word finding, or complex problem solving problems (½ of these folks will develop dementia in 5 yrs) - Dementia = Chronic thinking problems in > 2 areas - Delirium =Rapid changes in thinking & alertness (seek medical help immediately ) - Depression = chronic unless treated, poor quality , I “don’t know”, “I just can’t” responses, no pleasure Alzheimer’s Disease •Early - Young Onset •Normal Onset Vascular Dementias (Multi-infarct) Lewy Body Dementia FrontoTemporal Lobe Dementias Other Dementias •Genetic syndromes •Metabolic pxs •ETOH related •Drugs/toxin exposure •White matter diseases •Mass effects •Depression(?) or Other Mental conditions •Infections – BBB cross •Parkinson’s can look like agitation & confusion © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 3 Alzheimer’s - Early Alzheimer’s - Middle - New info lost - Trouble remembering relationships and roles - Recent memory worse - Mis-remembering - Problems finding words - Difficulty with understanding & saying what you want & mean - Mis-speaks - Time traveling - More impulsive or indecisive - Sensory and motor skill changes - Gets lost - Notice changes over 6 months – 1 year - Dis-uinhibited © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Alzheimer’s - Late Vascular Dementia - Mobility issues - Sudden changes - Pain vs sensation vs distress - Picture varies by person - Limited communication - Can have bounce back & bad days - Limited awareness - Judgment and behavior ‘not the same’ - Lack of understanding of tasks & care - Spotty losses - Total physical care assist needed - ‘Time’ sense is often impaired - In the moment – only - Emotional & energy shifts - Moments of clarity © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Lewy Body Dementia Fronto-Temporal Dementias - Movement problems - Falls - Many types - Visual Hallucinations - Frontal – impulse and behavior control loss - Fine motor problems – hands & swallowing - Says unexpected, rude, mean, odd things to others - Dis-inhibited – food, drink, sex, emotions, actions - Episodes of rigidity & syncopy - Temporal – language loss - Nightmares - Can’t speak or get words out - Fluctuations in abilities - Drug responses can be extreme & strange © Teepa Snow, Positive Approach, LLC – to be reused only with permission. - Can’t understand what is said, sound fluent – nonsense words © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 4 The person’s brain is dying © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Remember… When it comes to ‘sexual issues’ © Teepa Snow, Positive Approach, LLC – to be reused only with permission. The Goal: Learn to Dance with Your Partners © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. REALIZE … - It Takes at least TWO to Tango … or tangle… © Teepa Snow, Positive Approach, LLC – to be reused only with permission. When Something Is Not Working Well… What Do We Tend to Do? © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 5 Being ‘right’ doesn’t necessarily translate into a good outcome for everybody involved… © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Deciding to change approaches and behaviors WILL REQUIRE you to stay alert and make choices… it is WORK © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Who Are YOUR Sexually Challenging People? - Who Challenges YOU? © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Coming to an agreement is actually better than winning an argument… in the long run © Teepa Snow, Positive Approach, LLC – to be reused only with permission. It’s the relationships that are MOST critical NOT the outcome of one encounter © Teepa Snow, Positive Approach, LLC – to be reused only with permission. What are the Sexually Challenging Behaviors that GET TO YOU? © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 6 By managing your own behavior, actions, words & reactions you can change the outcome of interactions. REALLY Ask Yourself… - Is this Behavior a Problem Behavior - OR - is this a “So What” Behavior - An “Annoying” Behavior - FOR WHOM??? © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Is it a SEXUALLY RISKY BEHAVIOR? © Teepa Snow, Positive Approach, LLC – to be reused only with permission. If it is a ‘SO WHAT’ Behavior… - Risk to that person (physical, emotional, physiological risk)? - Can we agree to leave it ALONE! - Risk to caregivers? - Figure out how to let go of it … - Risk to Others? - Is the RISK REAL and IMMEDIATE? - Let it go! - Is it a possible or potential RISK? - Is it About Sexual Behavior or not? © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. If it is RISKY… SIX Pieces to the Puzzle - Describe the behavior – OBJECTIVELY - Personal history and preferences - WHO? - Type of dementia & Level of cognitive function - WHAT? - Other conditions & sensory losses - WHERE? - Environmental conditions - WHEN? - Care partner approach and behaviors - WHAT helps… WHAT makes it worse? - What happened – full day & all players - Frequency & Intensity? © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 7 The person’s brain is dying Normal Brain Alzheimers Brain © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Learning & Memory Center Hippocampus BIG CHANGE Understanding Language – BIG CHANGE Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm – Music Expletives PRESERVED Hearing Sound – Not Changed Formal Speech & Language Center HUGE CHANGES 8 Executive Control Center Emotions Behavior Judgment Reasoning Vision Center – BIG CHANGES Positron Emission Tomography (PET) Alzheimer’s Disease Progression vs. Normal Brains Normal Early Alzheimer’s Late Alzheimer’s Early- Routines & Repeats Diamonds Child - Word finding problems - Logic problems - Place & time confusion - Very ‘independent’ or seeking constant reassurance Becomes anxious and frustrated easily Has trouble with new routines and locations Tries to maintain control & social behavior May try to escape/leave Can use signage & cues - Self-awareness varies Gets ‘turned around’ - Fearful about what is wrong Momentarily ‘disoriented’ Does regular routines JUST - Typically resists outside FINE! helpers - Resents take-over G. Small, UCLA School of Medicine. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Moderate - Task Oriented Middle- Hunting & Gathering Emeralds Ambers - Has trouble sequencing thru tasks & activities Uses visual information to figure out what to do - Uses hands to touch, feel, handle, hold Follows samples & demos - Can’t do an activity if visual prompt is not there - - ‘Don’t need your help’ Specifics and content in speech can be limited - - Has a mission in mind Gets stuck on ‘stuff’ - Goes back in time Needs to be involved - Gets lost in place Looks for ‘stuff’ to do - Often skips steps - Looking for what to do and where to be - Believes they can do it © Teepa Snow, Positive Approach, LLC – to be reused only with permission. - Imitates actions – copies you Tool use is challenging Explores what is visible Follows others and hidden Invade other’s space to Investigates the environment May taste or eat what they see explore Difficulty terminating Repeats actions over and over Difficulty getting focused on Sees in pieces not whole care tasks Becomes easily distressed with Impulsive or indecisive unpleasant tasks Understands few words Asks ?s mechanically © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 9 Late - Stuck on GO End – Reflexes Rule Rubies Pearls - Gross motor only Can’t stop or sound asleep - Poor finger use Copies your mood – facial - Limited visual processing expressions - Very limited communication skills - Unable to do more complex motor actions - Imitates those around - Problems with chewing and swallowing - Bed bound or chair bound - Unable to sit up for any length of time Can’t grade strength - Unable to communicate verbally Better with rhythm and repetitive movements - Lots of reflexes Loses weight On the move – wanders forward – no safety awareness - Breathing changes - Moments of being present - Can make eye contact & some automatic responses © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Swallowing and eating problems Muscles shorten and contractures forms Pressure areas develop because of no movement & limited intake Responds to touch, voice, movement, smells Startles easily Motor agitation indicates needs © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Environmental Factors & Changes Health & Illness - Mobility problems? - Pain? - Sensory problems? - Mental health issues? - Other diagnoses of importance? - Physical Environment - People - Programming © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Environmental Aids Environmental Aids - Setting - Props - familiar - visible & invisible - friendly - timely - functional - available - forgiving (safe) - matched to ability - matched to interests © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 10 Care Partner Approach To Cope with Challenging Sexual Behaviors… Knowledge - Where will you start??? - An idea – Skills - Care partner education - Care partner skill building © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. REMEMBER Explore all of the following - Then… - Observe & document the risky sexual behavior thoroughly - what is the pattern - Personal background information - Level of cognitive function - Health information - when does it happen - Environmental issues - where does it happen - Caregiver approach & assistance - who is involved - Habits, schedules & time of day - what is said, done, attempted - what makes it better… worse © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Re-look at the problematic challenging sexual behavior… Make a PLAN! - What does the person need? - Who will do what - When will it be done - How will it work - What is the meaning of the the behavior? - What environmental change is needed - What props are needed - where will they be - Do you understand the risky behavior better? © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 11 Positive Physical Approach How you talk… - How you say it… - What you say… - How you respond… © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. How you help… Use empathy & Go with the flow - Sight or Visual cues - Verbal or Auditory cues Reality Orientation Telling Lies - Touch or Tactile cues © Teepa Snow, Positive Approach, LLC – to be reused only with permission. Hand-Under-Hand Assistance © Teepa Snow, Positive Approach, LLC – to be reused only with permission. What Should We Do? - Start the Conversation - Open the Dialogue - LISTEN to one another - Assess & Explore DON’T Assume © Teepa Snow, Positive Approach, LLC – to be reused only with permission. © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 12 Resources Specifically? - Offer training sessions - Educate staff & families - Screen & Ask - Observe & Consider - Problem solve – don’t assume © Teepa Snow, Positive Approach, LLC – to be reused only with permission. - Alzheimer’s Scotland has a good page - http://www.alzscot.org/pages/info/sexuality.htm - Alzheimer’s Australia - http://www.betterhealth.vic.gov.au/BHCV2/bhcarticles.nsf/pages/Deme ntia_sexuality_and_intimacy?OpenDocument - Alzheimer’s Society Toronto - http://www.asmt.org/resources_sexuality.htm - Tool kit from Ontario, Canada - http://www.fhs.mcmaster.ca/mcah/cgec/toolkit.pdf © Teepa Snow, Positive Approach, LLC – to be reused only with permission. 13
