Understanding & Ministering to Family Members with Dementia & Alzheimer’s Disease

1. Understanding & Ministering to Family Members with Dementia & Alzheimer’s Disease Presented by Frank Miller, Chaplain Education Consultant with Heritage & ARC Home Health & Hospice Care

2. The Basics

3. Dementia vs Alzheimer’s Disease

4. Dementia • Refers to symptoms that include changes in memory, personality, and behavior • Does not mean “crazy” • Changes in brain function are significant enough to interfere with daily functioning in a person who is awake & alert

5. Dementia • Alzheimer’s Disease is most common cause of dementia (50-60% of all cases) • Other diseases causing dementia are stroke; depression; problems with thyroid, liver, kidney, and vitamin deficiencies; brain tumors, brain injury, some infections, etc…..

6. Dementia is NOT… • Occasional forgetting of names, location of objects, finding the “right” word, what you were going to do when you entered a room, etc. • “10 Warning Signs of Alzheimer’s” www.alz.org/AboutAD/Warning.asp

7. Alzheimer’s Disease • First described by a German physician, Alois Alzheimer in 1907 • Dr. Alzheimer did an autopsy of a woman in her 50’s and found brain had beta-amyloid plaque & neurofibrillary tangles • Progressive & ultimately fatal disease

8. Brain Fact:Some causes of dementia are potentially reversible butAlzheimer’s Disease is not reversible.

9. Normal brain Alzheimer’s brain

10. Stages of Alzheimer’s • Alzheimer’s Association: 7 stages from “no impairment” to “very severe decline” • Simpler classification • Mild • Moderate • Severe

11. Mild or early stage • Forgetfulness • Inability to learn new things • Difficulty managing finances, planning meals, taking medications on schedule • Able to do most activities including driving • Gets lost going to familiar places • May be depressed

12. Moderate stage • Forgetfulness extends to “old facts” (moving backwards in time) • Repeats stories and makes up stories to fill in gaps • Difficulty performing tasks • Behavior problems • Agitation • Restlessness • Wandering • Paranoia, delusions, hallucinations

13. Moderate stage (cont) • Problems with intellect and reasoning • Poor judgment • Forgets manners • Appearance & hygiene deteriorate • Sleep disturbances

14. Severe (late) stage • May groan, scream, mumble, or speak gibberish • Refuses to eat • Fails to recognize family or faces • Difficulty with all essential activities of daily living • Requires considerable care & may need to be institutionalized

15. Alzheimer’s disease affects every individual differently

16. Care of Dementia Patient • Diagnosis as soon as possible • Use of available medications • Identify other health problems that might be contributing to dementia • Other diseases, medications, depression, nutrition deficiencies, pain, etc. • Good nutrition & hydration • Willing & capable caregiver

17. FDA approved medications for Alzheimer’s Disease • Aricept (Donepezil): approved for all stages • Exelon (Rivastigmine): mild to moderate stages • Razadyne (Galantamine): mild to moderate stages; used to be called Reminyl • Namenda (Memantine): moderate to severe stages

18. Note on medications:Approved drugs offer a modest, temporary delay in worsening of the disease.But…it can buy time to make decisions & save money for additional help.

19. A staggering fact… Approximately 5 million Americans care for a loved one with Alzheimer’s disease at home

20. Fatigue

21. Caregivers & Families • Alzheimer’s affects entire families, particularly as disease progresses • Caregivers often experience depression, anxiety, stress, & helplessness • Caregivers need respite time to maintain their own health • Caregivers & families need education

22. Great resources • The 36-Hour Day by Mace & Rabins • Creating Moments of Joy by Jolene Brackey • Alzheimer’s Organization website www.alz.org • Alzheimer’s Association North Central Texas Chapter 101 Summit Ave #300 Fort Worth, TX 817-336-4949

23. Long-term planning • Know end-of-life wishes of patient • Implement Durable Power of Attorney & Living Will • Investigate assisted living facilities & nursing homes (Memory Care facilities are best equipped for Alzheimer’s patients)

24. Long-term planning (cont) • Respite for caregiver • Other family members • Friends • Paid caregivers (agency, privately hired, respite through Alzheimer’s Association) • Home Health Care (skilled) • Medicare pays 100% for patients who qualify • May also be covered by some insurance

25. On the surface, there’s not much JOY in Alzheimer’s

26. The Facts • Disease of losses—short-term memory at first and then long-term memory later • No cure! • Progressive! • We aren’t sure what causes it! • It is a disease of grief after grief after grief!

27. Jolene Brackey, author of Creating Moments of Joy says… “We are not able to create a perfectly wonderful day with someone who has dementia, but it is absolutely attainable to create a perfectly wonderful moment; a moment that puts a smile on their face, a twinkle in their eye, or triggers a memory. Five minutes later, they won’t remember what you did or said, but the feeling you left them with will linger.”

28. How do you create a moment of joy for someone with dementia?

29. What brings joy to you?

30. For the person with Alzheimer’s disease and short-term memory loss, life is made of up of moments.

31. Remember… • As the disease progresses, the person with Alzheimer’s disease becomes younger and younger in his mind. • He/she may not recognize family members because in the age of his mind, the loved ones were children.

32. Live their reality… • Never force our reality on a person with dementia. • If your elderly husband insists he is 30 years old, ACCEPT it. • It is HIS reality. • His wife was young & wrinkle -free. • The children were in grade school.

33. Thou SHALT adjust the truth (in this situation)… • You will never be able to reason with a person with Alzheimer’s disease. • An 82 year old woman keeps trying to find her mother. It is cruel to tell her that her mother died years ago. Each time she hears this news, she will grieve her mother’s death.

34. Example… George, who mowed a golf course for a living, gets up early every morning and insists that he must go to work. Instead of telling him he is 83 and is retired, you tell him it has been raining and his boss called and told him to take the day off. Now, he can enjoy his day off instead of arguing with you about going to work. (joy!)

35. We need to change because the person with dementia cannotchange.The only person I can make change is ME.

36. Communication 90% of what the Alzheimer’s patient understands is non-verbal communication

37. Touch is communication • Basic need of life • Craved from the first moments of life • Our hands portray what is inside of us

38. Your mood is their mood. • If Momma ain’t happy, ain’t nobody happy! • Find a way to put yourself in a good mood • Quiet music has a calming effect

39. Communication Strategies • Be calm, positive, matter-of-fact • Reduce background noise & distractions • Talk to person face-to-face, at eye level • Touching the person may hold attention

40. Communication Strategies (cont) • Demonstrate task • Praise non-verbally (hugs, smile, pat on back) • Use short, simple sentences • Keep it positive--try to avoid negative words such as “no, don’t, can’t”

41. Communication Strategies (cont) • If person is fixated on one subject such as his old job, communicate using person’s long-term memory. “I understand you were a very good farmer.” • Avoid questions that require short-term memory

42. We must find the ways to “tickle” those long-term memories

43. Make a connection… • Instead of asking, “How are you?”, compliment them and start a conversation. • Tap into their greatness… • “I understand that you made the best chocolate pie in town!” • The answer may be “yes” OR she may launch into a memory of her chocolate pies. (joy!)

44. Busy hands are happy hands… • Create things for the person to do even if doesn’t need to be done—sorting laundry, shucking corn, sorting nuts and bolts, rolling yarn into balls • Have no expectations…allow mistakes (joy!)

45. Maintaining the independence of the person with Alzheimer’s disease will make the caregiver’s life easier and maintain dignity as well as stimulate the brain.

46. Odd behaviors are common with Alzheimer’s patients…wandering, dressing problems, verbal outbursts, hiding things, “borrowing” things that don’t belong to them, etc.

47. Choose your battles

48. What if the person insists on wearing the same outfit every day? Ask yourself: • Does this cause harm to the person? No. • Does this annoy me? Probably, but who cares. • Does this case harm to other people? No. • Do they remember they wore this yesterday? No.

49. Patience… • You’re going to lose it…we all do • When you have been asked the same question over & over, you WILL be frustrated! • Take a break…say you have to go to the bathroom, even if you don’t need to • Take a walk • Do something for YOU!

50. YOU…the caregiver • Need to take care of yourself before you can take care of someone else • Be involved in your own life • Spoil yourself as often as possible