Aging Together: Dementia, Friendship, and Flourishing Congregations

1. Aging Together: Dementia, Friendship, and Flourishing Congregations John T. McFadden Susan H. McFadden

3. The Longevity Revolution

4. Language issues • Senility (19th-mid 20th century) • Dementia (mid 20th century) – de-mentia, loss of mind • Alzheimer’s disease (1906, but more common after 1975 and the founding of the National Institute on Aging) • Neurocognitive disorders (after DSM-5, 2013) – NCDs?

5. Neurocognitive disorders (Minor and Major) NCD due to HIV infection Vascular NCD NCD due to Parkinson’s Disease NCD due to Prion Disease Fronto-temporal NCD NCD due to Alzheimer’s Disease NCD due to Huntington’s Disease NCD due to Lewy Body Disease Substance-induced NCD NCD due to traumatic brain injury Subtypes Mixed dementia

6. AD specificity Rene Dubois (2012): Alzheimer’s should be defined as “amnestic syndrome of the hippocampal type” AD generality The use of the term “Alzheimer’s means Alzheimer’s disease and related dementias” (National Alzheimer’s Program Act, 2011)

7. Currently… 11% of persons 65+ 38% of persons 85+ 44% of persons 75-84 13% of persons age 65-74 Brookmeyer et al. (2011). National estimates of the prevalence of Alzheimer’s disease in the United States. Alzheimer’s & Dementia, 7, 61-73.

8. We need a new STORY about dementia!

9. The old story… • “Primal metaphors” (George, 2010) • Language of warfare • People are victims • Dementia is a disease that “strikes” and “attacks” people’s brains • Dementia robs people of selfhood • It only creates burden • It must be vanquished

10. Why do we use the “primal metaphors” and the language of “apocalyptic demography”?

11. Sources of meaning in Western history (from Cole, 1992)

12. “Senility haunts the landscape of the self-made man.”(Ballenger, 2006)

13. Telling a NEW story A story of mindful relationality A story of I and Thou A story of personhood as grounded in relationship Who can tell this story?

14. Congregations…acting as schools for subversive friendship Why subversive?

15. In congregations, we learn how to be friends with God by living faithful friendships with others who also wish to be friends with God. Friendships not based upon obvious reciprocity are subversive in a consumer culture context.

16. How does dementia affect friendshipeven in congregations? Friends fall away for multiple reasons: • Fear of “identity contamination,” especially among older persons. • Anxiety and awkwardness (“I don’t know what to say to him.”) • Viewing friend as no longer the same “self” (“She is just an empty shell of the woman she was.” “I want to remember him as he was.”)

17. How is a friend different from an acquaintance?

18. Aristotle’s teachings on friendship (philia) Nichomachean Ethics • friendships based upon utility incomplete • friendships based upon pleasure incomplete • friendships based upon virtue complete

19. The virtuous friendship • We wish good for our friends and seek to do good on their behalf • We want our friends to continue to exist and will do what is in our power to guard and protect them • We commit to spending time with our friends • We share with our friends common choices and decisions centered in the effort to live virtuous lives • We share in our friends’ joys and sorrows

20. Continuing friendship when our friend no longer remembers the story of our friendship: Receiving the gifts our friend can offer A new experience of time Playfulness and laughter Deeper perspectives on self and the things of ultimate worth and value

21. Communication strategies • Be patient! Slow down! • Call the person by name; introduce yourself • Be aware of distractions in the environment • Be aware of body language – yours and the other person’s • Offer comfort and reassurance • Be willing to enter the “dementia zone” of non-linear, but meaningful communication

22. Friends do not attempt to “enforce consensus reality” • Do not ask “reality test” questions (“Do you know who I am?”) • Do not deny the reality your friend is experiencing (“Your husband died four years ago.”) • The proper role of a friend is to be fully present in the moment (kairos) and seek your friend’s “joy zones”

23. Dementia (AD in particular) has been called “the theological disease” • Religious faith sometimes defined as “remembering God and being mindful of God in all that I say and do.” Can one hold faith if one can no longer remember God? • Dementia is a “theological disease” because it raises core questions about what it is to be a self, or a creature formed in “the divine image.”

24. What defines our personhood and the imago Dei? “In all times and cultures, people have been most frightened of whatever represents the greatest threat to their fundamental identity as a self.” (Hauerwas) • Corporality as defining of selfhood • Cognition as defining of selfhood • Then how shall we define selfhood? • Relationally!

25. Elizabeth MacKinlay’s Model of Spirituality

27. What is the good life?What is fulfillment?What is required of you?

28. Judaism • Our relationship with God is defined by faithful covenant • Buber: God is the “eternal Thou” behind every I-Thou relationship

29. Rabbi Abraham Joshua Heschel: “It is through the experience of being obligated that we truly exist.”

30. Meister Eckhart (13th century Christian mystic) When God laughs at the soul and the soul laughs back at God, the persons of the Trinity are begotten. To speak in hyperbole, when the Father laughs to the Son and the Son laughs back to the Father, that laughter gives pleasure, that pleasure gives joy, that joy gives love, and love gives the persons [of the Trinity] of which the Holy Spirit is one. (Blakney, 1941, p. 245)

31. Relationships of love and joy

32. One person’s “joy zones”

33. Selfhood and the Divine Image are defined relationally While dementia may bring many losses and changes, it does not exclude us from sharing in relationships of laughter, pleasure, joy and love, with God and with one another!

34. “God has no brain” (John Swinton) • Terms such as “mind” and “being” cannot be reduced or medicalized; we have no mind apart from the Mind of God and we have no being apart from the web of sacred relationships that grant us identity and infuse our lives with meaning, worth and purpose.

35. Memory is not solely an individual possession • Corporate memory and shared cognition: the community remembers for us and with us (liturgy as the memory of community expressed through time) • The Memory of God is the source of our existence – to be forgotten by God is to cease to be.

36. The Drama of Embrace (Volf, 1996) Act One: Opening the Arms Act Two : Waiting Act Three: Closing the Arms Act Four: Opening the Arms Again

37. Focal things andFocal practices (A. Borgmann, 1984)

38. The “cult of normalcy”(T. Reynolds, 2008)

39. What can congregations do to welcome, value, serve and include older members, especially those who are journeying into memory loss and cognitive change, as well as their care partners?

40. Place resources where needs and opportunities are:Older members! Recognize need/ability for continued spiritual growth and service. Do not reduce older members to role or function (“our shut-ins”). Find ways to make elders with physical or cognitive limitations present to congregation. Recognize the difference between ministry and entertainment.

41. Reject false cultural definitions of personhood and the ways it stigmatizes and dismisses those with dementia. • “He’s just an empty shell” • “She’s really not with us anymore.” • “I want to remember him as he was.” • Do not reduce a sacred “Thou” to an “It”!

42. How do congregations offer hospitality and support? • Focus on ability rather than limitation • Provide needed practical support • Maintain an environment free from stigma and anxiety • Involve the entire community, including children and youth. • Pastor/priest/rabbi must serve as a model for valuing members with dementia.

43. What else can congregations do? Ask persons living with dementia what they want from their friends Teach people how to communicate with their friends with dementia Encourage community organizations to be intentional about including persons with dementia Enable people living with dementia to do good for others, together

44. Rethinking ministry with members living in care facilities • Change the language that reduces our friends to categories (“our shut-ins,” our “old folks in nursing homes.” • Find ways to make these friends present to the congregation (if not in person, through telling their stories). • Transform visits from an act of charity to an expression of friendship.