1. Dementia : Why Do They Do That? How Can I Help? When Do I Need Help?

2. REALIZE … It Takes TWO to Tango … or two to tangle…

3. Being ‘right’ doesn’t necessarily translate into a good outcome for both of you

4. It’s the relationship that is MOST critical NOT the outcome of any one encounter

5. As part of the disease people with dementia ‘tend to’ develop typical patterns of speech, behavior, and routines. These people will also have skills and abilities that are lost while others are retained or preserved.

6. What is it NOT… NORMAL Aging Slower to think Slower to do Hesitates more More likely to ‘look before you leap’ Know the person but not the name Pause to find words Reminded of the past NOT Normal Aging Can’t think the same Can’t do like before Can’t get started Can’t seem to move on Doesn’t think it out at all Can’t place the person Words won’t come – even later Confused about past versus now

7. What Could It Be? Another medical condition Medication side-effect Hearing loss or vision loss Depression Acute illness Severe but unrecognized pain Other things…

8. Cognitive Changes with Aging Normal changes = more forgetful & slower to learn MCI – Mild Cognitive Impairment = – 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 can look like agitation & confusion

9. Alzheimer’s Disease Early - Young Onset Normal Onset Vascular Dementias (Multi-infarct) Lewy Body 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 Parkinson’s Fronto- Temporal Lobe Dementias

10. Alzheimer’s New info lost Recent memory worse Problems finding words Mis-speaks More impulsive or indecisive Gets lost Notice changes over 6 months – 1 year

11. Vascular Dementia Sudden changes Picture varies by person Can have bounce back & bad days Judgment and behavior ‘not the same’ Spotty losses Emotional & energy shifts

12. Lewy Body Dementia Movement problems - Falls Visual Hallucinations Fine motor problems – hands & swallowing Episodes of rigidity & syncopy Nightmares Fluctuations in abilities Drug responses can be extreme & strange

13. Fronto-Temporal Dementias Many types Frontal – impulse and behavior control loss – Says unexpected, rude, mean, odd things to others – Dis-inhibited – food, drink, sex, emotions, actions Temporal – language loss – Can’t speak or get words out – Can’t understand what is said, sound fluent – nonsense words

14. What is Dementia?... It is BOTH a chemical change in the brain AND a structural change in the brain So… Sometimes they can & sometimes they can’t

15. PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain PET and Aging ADEAR, 2003

17. 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

18. Brain atrophy the brain actually shrinks cells wither then die abilities are lost with Alzheimer’s area of loss are fairly predictable … as is the progression BUT the experience is individual…

19. Memory Loss Losses – Immediate recall – Attention to selected info – Recent events – Relationships Preserved abilities – Long ago memories – Confabulation! – Emotional memories – Motor memories

20. Understanding Losses – Can’t interpret words – Misses some words – Gets off target Preserved abilities – Can get facial expression – Hears tone of voice – Can get some non- verbals – Learns how to cover

21. Sensory Changes Losses – Awareness of body and position – Ability to locate and express pain – Awareness of feeling in most of body Preserved Abilities – 4 areas can be sensitive – Any of these areas can be hypersensitive – Need for sensation can become extreme

22. Self-Care Changes Losses – initiation & termination – tool manipulation – sequencing Preserved Abilities – motions and actions – the doing part – cued activity

23. Language Losses – Can’t find the right words – Word Salad – Vague language – Single phrases – Sounds & vocalizing – Can’t make needs known Preserved abilities – singing – automatic speech – Swearing/sex words/forbidden words

24. Impulse & Emotional Control Losses – becomes labile & extreme – think it - say it – want it - do it – see it - use it Preserved – desire to be respected – desire to be in control – regret after action

25. 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

26. Dementia can be treated With knowledge With skill building With commitment With flexibility With practice With support With compassion

27. 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!

28. Take Some Time To… Figure out WHO you are And WHO your partner is… Similarities & Differences And Respect Both Partners’ Needs

29. Who Are You?... Your Partner? Introvert Logical & Reasoning Big Picture Plan it Out Extrovert Emotional & Feeling Lots of Details Just Do It

30. 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

31. 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

32. 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

33. 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

34. Care Partners… Be a partner, not a boss Be an advocate, build a team Do with me, not for me or to me… 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!

35. Some Key Beliefs & Principles: All people need to be needed – nurturing is a critical part of life worth living Dementia Steals Away Roles and Responsibilities that Make Us WHO We Are Activities can make a critical difference in the health and well-being of people with dementia IF Used Appropriately for the degree of involvement – the ‘Just Right’ Challenge