SOCIAL STIMULATION OR SOCIAL DISLOCATION? THE ENCOUNTERS OF NEWLY RELOCATED PERSONS WITH DEMENTIA WITH THE SOCIAL ENVIR

1. SOCIAL STIMULATION OR SOCIAL DISLOCATION? THE ENCOUNTERS OF NEWLY RELOCATED PERSONS WITH DEMENTIA WITH THE SOCIAL ENVIRONMENT OF RETIREMENT RESIDENCES No real or apparent conflict of interest to report F. Aminzadeh, RN, M.Sc.N, GNC (C) 1, 2, 3 W.B. Dalziel, MD, FRCP (C) 1, 3 F.J. Molnar, M.Sc., MDCM, FRCP (C) 1, 2, 3 L.Garcia, Ph.D, S-LP (C) 2, 3 1 Regional Geriatric Program of Eastern Ontario 2 Elisabeth Bruyère Research Institute 3 University of Ottawa

2. Methods • Qualitative Prospective Design • Triangulation of data sources: • Separate in-depth interviews with 16 persons with dementia (PWD) & family caregiver • Three points of data collection • Baseline: 2-month pre-relocation • Follow-up #1: 2-month post-relocation • Follow-up #2: 6-month post-relocation • Grounded Theory (Strauss & Corbin, 1998)

3. Caregivers mean age 59 (46-85) female 56% English 75% married 81% son/dtr of PWD 75% PWD mean age 85 (76-93) female 69% English 75% lived alone 75% lived in a house 63% early stage of dementia 69% Alzheimer’s Disease or mixed dementia 56% moved to room/studio (50%) or suite/APT (50%)

4. Adjustment Needs • “Settle in” Comfort • “Fit in” Connection • “Find Meaning in” Continuity

5. “Fit in” “The essence of good life is good interpersonal interaction” • Finding their place within new social environment to fulfill their higher order psychosocial needs for affiliation, belonging, connectedness, & engagement • More complex & challenging compared to “nesting” activities • Challenges faced in maintaining old ties & creating new ones

6. “Bordered Worlds”“Getting out is sort of going to a voyage to another country” • More restricted & bordered daily universe • Feelings of being cut-off from the outside world: • unsafe to venture out to explore new neighborhoods • unable or unwilling to use shuttle buses

7. Believed friends were reluctant to visit due to stigma attached to living in an “old age home”: • “I felt that people didn’t want to come & visit you , because of the retirement atmosphere… you’re in a senior place, it’s not a good atmosphere…” • Feelings of social disconnection compounded by their inability to recall visits by family/friends

8. Navigating New Social Terrain! • Described as being friendly, but somewhat strange, confusing, & impermeable • Presence of “cliques” & exclusive social groups created feelings of rejection, alienation & social exclusion

9. “I’d walk around & I never could find a place to sit down… every time I went to sit at a table I was told, ‘Oh, so-&-so sits there.’ It was quite difficult for a while. It was bothering me… until I met this friend and he said, ‘Come sit here’, then I had a place where I felt I belonged… that sounds a very small thing, but believe me it’s a very important thing to feel that you’re welcomed somewhere…”

10. “Degrees of Friendship” • Causal exchanges of social pleasantries • Meaningful & deep friendships are product of knowing people over time, spending time with them, & having common interests “I’m pretty alone here… they’re all friendly, but nobody says ‘well, come on in’….” “No one is interested in my subject….” • Preference to socialize with close friends/ family with whom shared stronger ties

11. Patterns of Age Identification • Welcomed opportunity to interact with peers (sense of camaraderie: “we’re all in the same boat”); greater acceptance of their own frailties, relief, gratitude & ↑ self-esteem • Resentment about having to live with an inferior & devalued social group (“loonies”, “kooks”, “people who can’t function to their full capacity”); maintained distance to preserve social identity

12. “Social Meals” or “Silent Meals”? • “I simply cannot follow the conversation … the man next to me is a nice gentleman, but speaks very softly. So, the result is that you say, ‘Hello. How are you?’ & that’s about the end of conversation... your train of thought is disturbed & you wanted to say something & you lost it… it’s just plain frustration to sit there & see them talking & you have no idea what you are doing there. Sit down here, it’s much nicer than being an outsider…. “

13. “Social Integration” • A minority immersed themselves in heart of activities, created satisfactory social connections, developed new attachments, roles, & identities: “I’m one of the activities here, I play piano for them. I’ve been an entertainer all my life….” • Reinforced sense of self-confidence, cohesion, & resilience

14. “Social Disconnection” • A minority felt alienated & disconnected & “lonely in crowd” • Grieved loss of past valued attachments, & lacked desire, ability &/or support needed to create new ties, meanings, & relationships “Those people they have their own friends, they come together. I’m an outsider… I have no chance here….”

15. “Vicarious”, “Quasi”, “Selective” Participation • Although not “proactive” about joining, most used creative strategies to venture out cautiously to public territories in a calculated way, by selectively trying more passive group entertainment activities that required minimal social commitment 

16. “I spoke to everybody, but I didn’t join anything … I figure I gotta find somebody I really like before I start uh, ganging around with them… I haven’t made any friends or anything {chuckles}, you know, usually I’m being very careful, … I just don’t want to uh, get in and get my feet wet & then not know how to extract myself….”

17. Caregiver Response“I’m surprised he’s kind of cocooning here… he’s turned into be much more of a loner….” • Lack of knowledge & resources: • potential impact of dementia (& other disabilities) • challenging social climates of retirement residences • defensive & protective behaviors of PWD as a coping strategy • A source of friction between PWD & caregivers!

18. Tripartite • Person: physical/mental health; ego strength, lifelong patterns of sociability, coping skills, & adaptive personality attributes; etc. • Family/Friends: availability of “significant others” to provide empathic emotional & instrumental support, be it a spouse, a “special” friend & companion, or other family caregivers • Retirement Residence: staff support; repertoire of activities offered; social ambiance ; homogeneity of social group; policies & practices of the residence; dining routines; etc.

19. Conclusion • Engagement in meaningful social activities & interactions is a prerequisite for “feeling at home” in a retirement residence • Many PWD faced difficulties in fulfilling their interpersonal & occupational needs for “vital involvement” • PWD need a supportive social environment to validate their sense of home & selfhood

20. Home is also a place of refuge, retreat & rejuvenation for many, where we can live independent & quiet lives free from outside intrusions Home is a place that simultaneously separates & connects people (Case, 1996).

21. Strike Right Balance! Disengagement Rest Individuality Continuity Engagement Activity Collectivity Novelty

22. Supportive Interventions • Learn about “psycho-environmental history” to maximize individuality & continuity with past • Facilitate expression of functional competence, choice to participate in meaningful solitary & group social/ occupational activities, etc.

23. Foster connection with: • People inside residence: assess need for support to navigate new social terrain (assign a staff member & a resident buddy to befriend, meal time matchmaking, etc.) • Outside world: encourage family contact, arrange for neighborhood walks with volunteers, assign buddy for outings, etc.

24. From Home to a Retirement Home:A Guide for Caregivers of PWD • Why a move may become necessary • How to make the decision • What emotions to expect & how to cope • How to choose the right place • How to prepare for the move • How to support the person with dementia after the move www.rgpeo.com

26. “I enjoy talking with very old people. They have gone before us on a road by which we, too, may have to ravel, and I think we do well to learn from them what it is like.” (Socrates, in Plato’s The Republic )