What Do People Living with Dementia & Their Families Need ... · - Be the BAD GUY – you don’t have to live with them ... - Tell them all those places are really pretty awful and

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© Teepa Snow, Positive Approach, LLC – to be reused only with permission.

Professional Caregiving in a Clinical Setting for People Living with DementiaWhat Do People Living with Dementia & Their Families Need from You?



Going Beyond Medications:

• It’s Not About the Drugs

• It’s About the Care, the Environmental Support, and Relationships

• Using What remains While respecting What is No Longer Possible

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When & Why Do They Need You???- To get the diagnosis

- To deny the diagnosis

- To get the ‘cure’

- To deal with problem behaviors

- To do placement

- To deal with the end of life


Getting the Diagnosis

- Common themes- Deciding something might be wrong…

- Seeking help about ‘memory problems’

- Difficulty getting the person to come in

- Being able to talk confidentially to the ‘Doctor’ YET honor your mother or father

- Nobody else in the family can see anything wrong

- How to talk about ‘IT’ to the person, to family, to friends…

- Which words you use do make a difference – different strokes for different folks

- Who ‘needs’ to know about it, and when, and why, and how…



- Helpful responses- Initiate questions about cognitive status

- Talk to the person with dementia as well as the caregiver

- Educate triage to screen for common symptoms of dementing illnesses

- Investigate the possibility it might be a dementing illness

- Complete a thorough evaluation to distinguish the cause(s) of the cognitive impairment

- Recognize ‘Mild Cognitive Impairment’ as a possible pre-courser to dementia with some unique features and issues

- Offer private time to primary family member to share concerns

- Listen & watch for responses to selected word use

- Schedule a follow-up visit for ‘treatment planning’

- Offer referral for a second opinion, if there is resistance

- Refer family & patient with a specific phone number and contact person at the Alzheimer office

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- Please don’t…- Tell them its probably “nothing to be worried about” – they

already are

- Explain it away as “We all get more forgetful as we age” without a full work-up –

- Deny the person the right to know what’s wrong with them

- Use only one way of describing what’s wrong

- Make the family member ‘say it’ in front of the person they are worried about

- Talk about the demented person… not to them

- Try to describe the entire course of the disease in one session

- Offer drugs without clear treatment objectives


Denying the Diagnosis

- Common themes

- My loved one doesn’t have dementia, s/he has Alzheimer’s or visa versa

- Surely there is something else wrong with her/him

- Holding onto hope

- Not ready to accept the diagnosis

- Anger about the situation, the future, the loss…

- Fear for the patient & fear for oneself

- You aren’t an expert in this – I want to see an expert



- Helpful responses

- Listen empathetically to the caregiver

- Encourage the person to ventilate

- Consider referral to a specialist

- Provide the objective data – results of the evaluation process-after the person vents

- Talk about what all you have considered

- Schedule a return visit rather than an ‘all at once’ session

- Plan to repeat information as needed

- Encourage contact with the Alzheimer supports for education & support

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- Please don’t…- Try to force the issue- Stop talking about it- Try to ‘just get it over with’- Getting defensive or angry in return


Looking for the magic CURE

- Common themes

- Sound bites = new ‘fixes’

- Trying something is better than doing ‘nothing’

- Surely there is something that can be done

- Since you can’t do much of anything, then I need to look elsewhere

- Research results on animals means it will work the same on humans



- Helpful responses- Use the Alzheimer’s Association literature for up-to-date info on

the latest findings related to these diseases – national web sites are available

- Consider using complementary therapies or alternative that are ‘reasonable’

- Educate caregivers about the physiology of the disease and pharmacology of current therapies

- Refer for research programs or protocols, if interested

- Encourage contact with the Alzheimer support for education & support

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- Please don’t…

- Discount everything without checking it out

- Not being knowledgeable about what is ‘out there’

- Not giving folks options to explore ‘non-traditional’ alternatives

- Not having & sharing clear treatment goals identified for drugs or treatments


Helping with Problems

- Common themes- Keeps wanting to drive

- Can’t manage money or pay bills effectively

- Doesn’t take medications the way they are prescribed

- Makes up information…

- Becomes fearful of or angry with others and what they have done, are doing, or might do…

- Goes out and gets lost

- Wanders in and out of the house

- Don’t sleep through the night… Gets up and down a lot!

- Tries to do things they can’t safely do anymore (drive, use power tools, cook…)

- Won’t, can’t, or doesn’t accept help with personal care

- Doesn’t recognize familiar people or caregivers

- Strikes out or becomes very verbally distressed during personal care


Helping with Problems- Helpful responses- Be the BAD GUY – you don’t have to live with them

- Write out the information for later & repeated sharing with the patient by the caregiver-TRY USING A PRESCRIPTION PAD

- Be prepared to have triage repeat the message many times

- Have the caregiver consult –- to ‘disable’ the car

- to secure the doors and windows

- to develop an effective monitoring system

- to get ideas and plans for improving daily routines and activities

- for Safe Return – an emergency locator system

- to get financial and legal counsel to protect and optimize assets

- Use the concept of ‘shared liability’ for early stage and logical discussion

- Assess the caregiver for ‘stress level’ and need for assistance

- Use drugs carefully to meet specific identified needs with specific treatment outcomes

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Helping with Problems

- Please don’t…- Tell them it is just part of the disease and there is ‘nothing’ that can be

done for it

- Let the family member be the one to take away the rights, privileges, keys…

- Don’t address these real life problems caused by symptoms of the disease

- Prescribe CNS acting drugs without careful environmental and behavioral intervention FIRST

- Tell them the information once and expect them (both the caregiver and patient) to remember it once they leave

- Treat caregiver frustration or incompetence with drugs for the patient


Placement

- Common themes- I promised I would NEVER put my loved one in a place like that

- I don’t know anything about these places

- I can’t do this anymore

- Placement in a resident program is the only option being thought about

- How can we talk about it… ‘s/he doesn’t remember anything’

- What should I tell him/her?

- Placement = failure as a caregiver

- Placement = failure as a family member

- Placement = the end of the caregiving relationship

- Highly emotionally charged event with lots of family opinions


Placement

- Helpful responses- Encourage the use of support programs early on – it’s a long journey

- Encourage early exploration of options for care – BEFORE the need is there

- Make up a list of places for which you can/do provide medical care for individuals

- Talk about ‘giving it a try’ – emphasize the option to ‘change your mind’

- Reinforce the need for an ‘adjustment period’ with any trial

- Encourage the exploration of ‘respite’ – ‘give yourself a break’ options

- Help folks to see they will still be caregivers & family – although the physical burden of care may be lifted

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Placement

- Help folks recognize not everyone is meant to be a caregiver for someone with dementia – you can love someone and not be their primary caregiver

- Encourage consideration of placement at ‘naturally progression points’

- Hospitalization of patient or caregiver

- Loss of function (incontinence, mobility…)

- Safety issues

- Encourage contact with the Alzheimer Support for education & support


Placement

- Please don’t…

- Let them do it alone

- Tell them all those places are really pretty awful and you won’t put your loved one there

- Tell them if they do place the person they will need to get a new doctor right away

- Wait to talk about placement until it becomes a crisis

- Encourage them to keep on trying when they are showing evidence or exhaustion or extreme distress


Coping with the End

- Common themes- Should we have a DNR order?

- Who should be making decisions?

- What does a DNR order mean?

- What financial arrangements need to be made?

- What about a feeding tube?

- What about treating infections and pneumonias?

- I don’t want her to suffer

- Pain control issues

- Hospitalization?

- Hospice involvement

- ‘Starving to death’

- ‘Dying of thirst’

- I don’t want her/him to think I’m giving up on her/him

- Increasing primitive reflexes indicate distress

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Coping with the End

- Helpful responses- Frame conversation from a “What will we do?” versus a “What won’t we

don’t?” perspective (comfort, safety, hygiene…)

- Talk about issues early

- Encourage advance directives and durable power or attorney early in the disease process-preferably when the person with the condition can still participate

- Encourage family sessions to talk about options & concerns before crises

- Provide options and information, not absolutes

- Talk about a dry versus a wet death

- Talk about the neurological changes the person is experiencing

- Refer to Hospice

- Encourage contact with the Alzheimer’ support system for more information and support


Coping with the End

- Please don’t…

- Wait until it needs to be dealt with

- Don’t really talk about it

- Use a standard operating procedure

- Forcing caregivers who are not able to decide to make a decision

- Not making sure consent is informed

- Not recognizing the value of a ‘good death’ at the end of this very long and hard journey

What Should You Know About Aging,

Alzheimer’s, & All the Other Dementias:

What You Choose to Do Matters!

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Not normal … changes starting

• Inconsistent

• Worse when tired or sick OR in unfamiliar or uncomfortable setting

MCI

• The beginning of NOT NORMAL COGNITION

– Memory

– Language

– Behavior

– Motor skills

• Not life altering – BUT definitely different… for you

Ten Early Warning Signs• memory loss for recent or new

information – repeats self frequently

• difficulty doing familiar, but difficult tasks – managing money, medications, driving

• problems with word finding, mis‐naming, or mis‐understanding

• getting confused about time or place ‐ getting lost while driving, missing several appointments

• worsening judgment – not thinking thing through like before

• difficulty problem solving or reasoning

• misplacing things – putting them in ‘odd places’

• changes in mood or behavior

• changes in typical personality

• loss of initiation – withdraws form normal patterns of activities and interests

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Is This ALWAYS Alzheimers? NO!

• Some other form of DEMENTIA

• Symptom of another health condition

• Medication side‐effect or interaction

• Undetected hearing loss or vision loss

• Depression – typical or atypical

• Delirium – acute physiological or psychological issue

• Pain‐related – central acting meds or chronic distress

Screening Options

• OLD – MMSE

• New

– AD‐8 Interview

– SLUMS – 7 minute screen

– Animal fluency – 1 minute # of animals

– Clock Drawing – 2 step

– Full Neuropsychological testing panel

AD8 Dementia Screening Interview

• Does your family member have problems with judgment?

• Does your family member show less interest in hobbies/activities?

• Does your family member repeat the same things over and over?

• Does your family member have trouble learning how to use a tool, appliance, or gadget ?

• Does your family member forget the correct month or year?

• Does your family member have trouble handling complicated financial affairs ?

• Does your family member have trouble remembering appointments?

• Does your family member have daily problems with thinking or memory?

• Scores:

Changed, Not Changed, Don’t Know

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Animal Fluency

• Name as many animals as you can

• Give one minute – (don’t highlight time limit)

• Count each animal named (not repeats)

• Establish Baseline versus Normal/Not Normal

– old ‐ 12 normal for > 65 and 18 for <65

– NEW ‐ Compare you to you OVER time

Clock Drawing

• Give a BIG circle on a blank sheet of paper

• Ask to draw the face of a clock ‐ put in the numbers

• Watch for construction skills & outcome

• Ask to put hands on the clock to indicate 2:45

• Watch for placement and processing

• Scoring: 4 possible points

– 1‐12 used correct quadrants

– minute hand correct hour hand correct

SLUMS• Orientation – day of week, month, state (3)

• Remember 5 items – ask later (5)

• $100 – buy apples $3 and Trike $20

– What did you spend? What is left? (2)

• Animal fluency (0‐3) (<5, 5‐9, 10‐14, >14)

• Clock drawing (4) – numbers in place, time right

• Number reversals (2) – 48 – say 84…

• Shapes (2) – ID correct, which is largest

• Story recall (8) – recall of info from a story – 4?s

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SLUMS ‐ rating

High School Education

• 27‐30 – Normal

• 21‐26 – MNCD (MCI)

• 1‐20 ‐ Dementia

Less than High School

• 25‐30 – Normal

• 20‐24 – MNCD (MCI)

• 1‐19 ‐ Dementia

TWO Mimics to KNOW(copy cats & concurrent illnesses)

• 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

Typical and atypical

sad

mad ‐ can look like agitation & confusion

(this condition can improve with attention & treatment)

• These signal a vulnerable brain – heads up!

Mimics of Dementia

• Depression

– can’t think

– can’t remember

– not worth it

– loss of function

– mood swings

– personality change

– change in sleep

• Delirium

– swift change

– hallucinations

– delusions

– on & off responses

– infection

– toxicity

– dangerous

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Drugs that can affect cognition

• Anti‐arrhythmic agents

• Antibiotics

• Antihistamines ‐decongestants

• Tricyclic antidepressants

• Anti‐hypertensives

• Anti‐cholinergic agents

• Anti‐convulsants

• Anti‐emetics

• Histamine receptor blockers

• Immunosuppressant agents

• Muscle relaxants

• Narcotic analgesics

• Sedative hypnotics

• Anti‐Parkinsonian agents

Washington Manual Geriatrics Subspecialty Consults edited by Kyle C. Moylan (pg 15) – published by Lippencott, Wilkins & Williams , 2003

Dementia – What Changes?

• Structural changes –permanent

– Cells are shrinking and dying

• Chemical changes ‐ variable

– Cells are producing and sending less chemicals

– Can ‘shine’ when least expected – chemical rush

Alzheimer’sDisease

•Young Onset•Late Life Onset

•LewyBody Dementia• Diffuse LBD• Parkinsonian

type dementia

DEMENTIA

Other Dementias•Genetic syndromes•Metabolic pxs•ETOH related•Drugs/toxin exposure•White matter diseases•Mass effects•Depression(?) or Other Mental conditions•Infections – BBB cross

Fronto-Temporal Lobe Dementias

VascularDementias(Multi-infarct)

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Alzheimer’s –Two Forms

Young Onset

Late Life Onset

Normal Brain Alzheimers Brain

Learning & Memory Center

HippocampusBIG CHANGE

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Understanding Language – BIG CHANGE

Hearing Sound – Not Changed

Sensory StripMotor StripWhite Matter ConnectionsBIG CHANGES

Formal Speech & LanguageCenter

HUGE CHANGES

Automatic SpeechRhythm – Music

ExpletivesPRESERVED

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Executive Control Center

Emotions Behavior JudgmentReasoning

Vision Center – BIG CHANGES

Positron Emission Tomography (PET) Alzheimer’s Disease Progression vs. Normal Brains

G. Small, UCLA School of Medicine.

Normal Early Alzheimer’s

Late Alzheimer’s

Child

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Young Onset

• 3 groups – genetics, Down’s, life style

• Young family – kids often involved

• Mis‐diagnosis & non –diagnosis is common

• Work may be first place to notice

• Relationships are strained early ‐misunderstanding

• Services are a problem – usually

• Finances are problematic

Alzheimer’s

• New info lost

• Recent memory worse

• Problems finding words

• Mis‐speaks

• More impulsive or indecisive

• Gets lost

• Notice changes over 6 m – 1 yr

• Lasts 8‐12 years

Typical treatment for Alzheimers

• Start with AChEI as soon as diagnosis is made

• If side‐effects are too much – try another one

• Stay on the AChEI until ‐‐‐ 2 groups of thought

– Placement in a ‘facility’

– Considering other med stops – near end

• Add Namenda – mid‐stage disease

• Stay on Namenda – as above

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Normal Brain Cells

Neurotransmitters (AChE)– being sent – message being communicated

to the next cell

Normal Brain Cells

Once the message is sent, then enzymes lock onto the messenger chemicals and take them out of

circulation so a new message can be sent

plaques tangles

Less neurotransmitter Further to go to get to the

next cell

Enzymes (AChE inhibitors) –get to them BEFORE they

deliver their message

Brain Cells with Alzheimer’s

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Alzheimer’s drugs provide FAKE messenger chemicals that distract the enzymes. They attach to the Fake

AChE & the message can get thru

What do Alzheimer’s drugs DO?

Aricept, Exelon, Reminyl (Razadyne)

One Other Dementia Drug

• Memantine ‐ Namenda

– from Europe ‐ 10 years of research

– came 4.5 years ago to the US

– different effect

– moderates glutamate absorption

– Works best in combination with AChE inhibitors

Keeps the cell from getting so much glutamate in it

Can use it with AChE inhibitors… two actions

Vascular Dementia

• Sudden changes – stepwise progression

• Other conditions: DB, HTN, heart disease

• So, damage is related to blood supply/not primary brain disease: treatment can plateau

• Picture varies by person (blood/swelling/recovery)

• Can have bounce back & bad days

• Judgment and behavior ‘not the same’

• Spotty loss (memory, mobility)

• Emotional & energy shifts

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Vascular dementia

CT Scan

The white spots indicate dead cell areas ‐mini‐strokes

Latest Thinking About Vascular Treatment?

• Lots of similarity with Alzheimer’s

• Manage blood flow issues CAREFULLY!

• Watch for and manage depression

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Lewy Body Dementia

• Movement problems ‐ Falls

• Visual Hallucinations – animals, children, people

• Fine motor problems – hands & swallowing

• Episodes of rigidity & syncopy

• Nightmares or Insomnia

• Delusional thinking

• Fluctuations in abilities

• Drug responses can be extreme & strange

– Can become toxic, can die, can become unable to move

– Can have an OPPOSITE reactions

Latest Thinking about Lewy Body Treatment

• Use AChIs

• Add Namenda early

• BE VERY careful about anti‐psychotic meds

• Parkinson’s meds – may help movement BUT may make hallucinations and delusions worse

• Anti‐depressants & Anti‐convulsants – may be used to help anxiety, sleep, & depression – can increase confusion, movement & drowsing

Fronto‐Temporal Dementias• Many types – Typically Younger Onset

• Frontal – impulse and behavior control loss (not memory issues)– Says unexpected, rude, mean, odd things to others

– Dis‐inhibited – food, drink, sex, emotions, actions

– OCD type behaviors

– Hyperorality

• Temporal – language loss– Can’t speak or get words out

– Can’t understand what is said, sound fluent – nonsense words

Positive Approach, LLC ‐ 2012

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FTDs

• FvFTD – frontal varient of FTD

• FTD – frontal‐temporal lobe dementia

• TLD – non‐fluent aphasia

• TLD – fluent aphasia


Temporal Lobe Non‐Fluent Aphasia

• Can’t NAME items

• Hesitant speech

• Not speaking

• Worsening of speech production over time

• Echolalia

• Mis‐speaking

• Word salad

• Receptive inability

• Other skills intact –early

• 25% never develop global dementia


Temporal Lobe Fluent Aphasia

• Has smooth delivery

• More nonsense words

• Word salad

• May think they make sense

• Expect rhythm back

• Fixates on a few phrases

• Chit‐chats if enjoying company

• Volume control varies –limited awareness of others’ needs

• There are frequently 1‐2 ‘value words’ mixed in to speech

• Picks up on ‘value words’ they hear – they then connect & want to talk more

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FvFTD

• Mis‐behavior

• Impulsivity

• Dis‐inhibition

• Inertia

• Obsessive compulsive behaviors

• Inattention

• Lack of social awareness

• Lack of social sensitivity

• Lack of personal hygiene

• Becomes sexually over‐active or aggressive

• Becomes rigid in thinking

• Stereotypical behaviors

• Manipulative

• Hyper‐orality

• Language may be impulsive but unaffected OR may be reduced or repetitive


FTD (Pick’s Disease)

Frontal Issues

• Poor decision making

• Problems sequencing

• Reduced social skills

• Lack of self‐awareness

• Hyper‐orality

• Ego‐centric

• Dis‐inhibited – food, drink, words, actions

• OCD behaviors early

• Excessive emotions

Temporal Issues

• Reduced attempts to talk

• Reduced content in speech

• Poor volume control

• Public use of ‘forbidden words’

• Sing‐song speech

• Can’t understand others’ words


Pick’s Disease

PET Scan


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Latest Thinking About FTD Treatments

• Consider Namenda earlier

• Look at SSRI medications

• May use medications used to treat OCD

• May NOT use AChI Medications


What if it doesn’t seem to be one of these?

• Atypical or other dementias

• Mixed picture


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Other Dementias• Genetic syndromes – Huntington’s Chorea

• ETOH related – Wernickes or Korsakoffs

• Drugs/toxin exposure – heavy metals, pesticides

• White matter diseases - MS• Mass effects – tumors & NPH• Depression and Other Mental Conditions• Infections – BBB cross – C-J, HIV/Aids, Lyme

• Parkinson’s – 40% about 5-8 yrs in• Progressive Supranuclear Palsy


Alcohol‐Drug Related DementiaMay be called ‐Wernicke’s & Korsakoffs syndrome

• Possibly caused by neurotoxicity &/or Vitamin B1 & thiamine deficiency

• Common Symptoms

– Decreased ability to learn ‘new’

– Decreased interest in valued activities, people, life

– Impaired judgment and decision making

– Emotional lability or apathy

– Problems with balance and coordination

– Problems with social control and behaviors

– Problems with initiation & termination

Dual Diagnosis – Young Dementia

• Underlying psychiatric illness

– Diagnosed and treated

– Undiagnosed but suspected

– Undiagnosed and unrecognized

• Newer onset of symptoms of dementia

– Diagnosed and treated

– Undiagnosed but suspected

– Undiagnosed and unrecognized

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Chronic Traumatic Encephalopathy

• Caused by repeated head injuries or concussions – doesn’t happen to all

• Symptoms

– Frontal lobe issues

– Temporal lobe issues

– Sometimes rapid progression into ‘Alzheimer’ patterns

– Sometimes rapid progression into FTD pattterns

Downs Syndrome & AD

• Probably affects the vast majority of people with Downs

• Due to premature aging, onset is earlier

• 45‐65 – numbers increase dramatically

• Some people will experience very rapid onset (1‐3 years)

• Most progression lasts 3‐10 years

• Frequently have other medical pxs

Downs and Unique Changes

• Attention losses are first ‐ not memory

• Self‐care skills are damaged early

• Seizures may be noted – ‘staring’

• Memory pxs are not the 1st noticed

• Reduced speech attempts – more slurring or repetitive words

• Increased stereotypical behaviors

• Sensory needs & tolerances change

• Behaviors change – ‘plans’ don’t help

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Lots of other dementias

• 80 + forms, types, causes….

• Some progress very rapidly

• Some are genetic some are not

• Some are unique, some follow more traditional patterns


Mixed picture

• Can have multiples

• can start with one and add another

• Can have some symptoms – not all

• Also can have other life‐long issues and then develop dementia (Down’s, Mental illness, personality disturbances, substance abuse)


So, You are NOTICING CHANGES…

What Should You DO?

Get it assessed –

Go see the doctor!

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Why Bother Getting a Good/Complete Diagnosis

• Future plans

– Progression & prognosis

– Finances

– Health

• Being in control

• Medications can make a difference in quality of life

What Should Happen When Going to See the Doctor?

If you are concerned but <65

• Screening of your thinking

• Simple ones– Animal fluency

– Orientation &3 item recall

– Clock drawing

• Short but helpful– MMSE

– SLUMS

• Open discussion about who, what when, where, why?

If you are >65

• Screening of your thinking

• Simple ones– Animal fluency

– Orientation &3 item recall

– Clock drawing

• Short but helpful– MMSE

– SLUMS

• Open discussion about who, what when, where, why?

If the Screen Indicates Concerns…

• R/O other 2 D’s, Look at Meds

• Complete work‐up & follow up

OR

• Send for a full Neuro‐psychological eval

• THEN follow up with you

OR

• Refer to a specialist

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Try to get a Work‐Up –A Diagnosis

• Two possible situations…

– Aware and cooperative

– Not aware and NOT interested or willing

Getting a Diagnosis

What Should Happen?

What Should NOT?

What Should be DONE…

• A complete physical, medical, & psychological history

• A good history from the person and the family of the ‘problem’

• A thorough PE neurological & cardiac exams with blood work

• A complete medication review• Imaging study (CT, MRI, PET)• Neuropsychological testing – what works and what

doesn’t• FOLLOW-UP and counseling or at least a referral

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What Should We DoIf We Suspect Something Might Be

Happening?• Be supportive

• Be an ADVOCATE

• Work Out Health Care Support – HC‐PoA

• Check with Your Doctor – Raise Your Concern

• Consider a Neuropsychological Assessment

• Consider Seeing a Specialist – geriatrician, neurologist, gero‐psychiatrist

When Should You Consider getting a Second Opinion?

• When what we talked about didn’t happen

• When you feel un‐listened to about concerns

• When you are not offered options that seem reasonable

• When you think or feel that the MD is not skilled enough to do a good job of managing this

• When it is an atypical dementia

Intervention & Programming to:

• physical activity

• mental activity

• social activity

• spiritual involvement

• well-being and self-worth

• minimize ‘risky’, challenging, or ‘dangerous behaviors

• reduce anxiety or distress

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Latest Thinking About Risk Reduction…

• Help…

– Mental activity

– Aerobic activity

– Enough vitamins E & C

– Heart Smart Diet

– Omega 3 fatty acids

– Lower weight

– Not smoking

– Avoiding head injuries

– Getting enough sleep

– De‐stressing

• Help…

– Statins (if needed)

– NSAIDS (if needed)

– Keeping iron in limits

– Keeping homocysteine ‘right’ –Vitamin B’s

– Staying socially active

– Getting depression treated

– Control diabetes better

– Control hypertension better

Family and Caregivers…

• Take care of yourself

• Understand the symptoms & progression

• Skills in support & caregiving

• Skills in communication & interactions

• Understand the condition

• Identify & use resources

• Set limits for yourself

Support Groups for -

• people with various types of dementia

• care givers – by dementia type

• family members – by dementia type

• those recovering from the loss of the person they have cared for

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Community Resource Development

• Programs

• Volunteers

• Funding

• Options

So… What is Dementia?

• It changes everything over time

• It is NOT something the person can control

• It is NOT always the same for every person

• It is NOT a mental illness

• It is real

• It is hard at times

Dementia can be treated

• With knowledge

• With skill building

• With commitment

• With flexibility

• With practice

• With support

• With compassion

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How to Get Started…

• Be Honest …

• What is Going on NOW?

• Get someone to help you look at it

• Talk about ‘what is’ …

– The GOOD

– The BAD

– The UGLY!

Take Some Time To…

• Figure out WHO you are

And

• WHO the other person is…

• Similarities & Differences

And

• Respect Both Partners’ Needs

Who Are You?... Who Is Your Partner?

• Introvert

• Logical & Reasoning

• Big Picture

• Plan it Out

• Extrovert

• Emotional & Feeling

• Lots of Details

• Just Do It

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Four Key Building Blocks

• Activities to Relax & Re‐energize

• Activities to Feel Productive & Valued

• Activities for Fun & ‘Just Because’

• Activities to Take Care of Yourself

Its all about BALANCE

• Some of each

• Not too much of any

• Get into a routine & stick to it

• With a little changing up

• And time in between to chill

• Some old, some new

• Some for me, some for you

Things that will HELP…

• Build activities

• Get active

• Socialize

• De‐Stress

• Get enough sleep

• Get sleep apnea & depression treated

• Control blood pressure & diabetes

• Take meds CAREFULLY

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Some Specifics…

• Help to make new friends – form partnerships

• Help keep the old – familiar contacts

• Explore & create volunteer opportunities

• Use old skills and routines in new ways

• ‘Give it a try’ – offer more than once

• Start low, go slow… build a little at a time

• Consider a support group for talking about changes

• Get away from your partners… some

• Build a WHOLE day – 24/7

For Care Partners…

• Be a partner, not a boss

• Be an advocate, build a team

• Do withme, not forme or tome…

• Learn the ‘SO WHAT?’ philosophy…

• Learn to let go not give up

• Learn what you are good at, & what not…

• These ideas are for you TOO!

Documents

What Do People Living with Dementia & Their Families Need ... · - Be the BAD GUY – you don’t have to live with them ... - Tell them all those places are really pretty awful and