Key Transitions in Dementia as Experienced by Employed Family Caregivers Tracey O Sullivan O Andrea Ghazzawi (UOttawa) Alyssa Schwartzentruber (UWO) Linda Garcia (UOttawa, EBRI) Sullivan (UOttawa, EBRI) Presentation for the Canadian Public Health Association Conference, Toronto, Ontario June 15, 2010
Background Approximately 2.7 million Canadians provide some form of care for seniors (StatCan, 2007) and many of these family or informal caregivers assist someone with dementia. More than 35 million people worldwide currently live with dementia, 500,000 of whom are in Canada (Canadian Alzheimer Society, 2010). Ample evidence suggests dementia care is a dynamic process, yet the specific transitions families go through and their coping strategies are less understood.
We defined a transition as an observed change in a person s functioning, resulting in the need for more support in one or more of the areas of medical care, communication, supervision, independence, or transportation, due to intrinsic factors or changes in their social or physical environments. This definition combines the definitions provided by Runge et al. (2009) and Chambers, Hendriks, Hall, Raina, & McDowell (2004) with the categories of functioning outlined in the C-MIST C functional needs framework (Kailes, & Enders, 2007).
Purpose to explore what family caregivers identified as key transitions in their experience providing care for a family member with dementia, and the strategies they used to cope with these turning points in the dementia care trajectory.
Method Qualitative design using focus group and written responses to document retroactively transitions in the dementia care trajectory ry Recruitment: Radio announcements, flyers distributed at medical offices, social service organizations, and inserted in the billing invoices at several residential care facilities** Participant inclusion criteria: (a) Full-time employment (30+ hr/week); (b) being the primary contact person and/or providing supplemental care for PWD living in a residential facility within the previous 18 month; (c) basic functional level in English. All participants signed a consent form approved by the university research ethics board.
Method 3 focus groups (90min) with family caregivers who self-identified as the primary family caregiver for a PWD who lived in a residential facility in the 18 months prior (total n=12) Semi-structured interview guide Please describe your experience of caring for a family member with dementia ; From the time it is apparent someone is having difficulties with memory, to the point you are at right now, what would you say are key transition points (turning points) for a family caring for someone with dementia? entia? ; What are the significant events that stand out during your whole experience with your loved one s s dementia? ; What types of social supports would be helpful to assist with managing the demands of working and being a family caregiver for someone with dementia who lives in a residential care facility?
Method Prior to the focus group, each participant filled out a blank table where they identified the transitions or turning points they had experienced during the course of providing care for the PWD. Each focus group was transcribed verbatim and reviewed independently by 3 of the authors. A coding grid was then established by consensus. All the transcripts were double-coded by 2 authors, using Nvivo7 TM software. We added additional nodes as needed. Emergent themes were discussed at length, until consensus was reached about which themes were most representative of the data. We agreed that saturation of the data was reached through these three focus groups.
Participant Demographics Mean age = 54.7 (Range = 44-64 yrs) 5 Male; 7 Female 11 coupled; 1 divorced 11 Caucasian (1 Caucasian/Asian) Employment: (all >30hr/wk) 6 public sector 3 private sector 3 self-employed employed 9/12 household income >$81,000 3 providing care from another city
Findings 13 key transitions emerged and we categorized them according to changes in functional needs The functional needs emerged as Health/Medical Concerns; Increased Need for Supervision; Communication Exchanges and Social Connections; and Transportation and Independent functioning
Functional Needs Approach People have different functional needs When those needs are met, people can function well in daily living or during crises/disasters When those needs are not met, people are at risk of negative impact from conditions of extreme stress Most of the needs can be categorized into the following categories: es: Communication Medical Needs Independence Supervision Transportation
Findings The transitions around health / medical needs included 3 themes: a) cues that prompted families to seek medical diagnosis [My niece] noticed my mother was having memory lapses and none of o the rest of us even believed her. [My niece] reported this to us all and we were like Really, oh, she must be tired.. But looking back now that was a very astute observation and we did start to notice other things b) decreased functioning following illness or injury We were trying to persuade her to move out into a retirement residence, but the final turning point was hospitalization caused d by an accident she had. She fell on some ice coming out of church one o day and broke her wrist So she said that she really can t t go back there c) gradual indicators that the dementia had advanced.
Findings Transitions that required increased need for supervision included a) heightened risk of an accident b) getting lost c) reduced safety by staying alone Getting my mother s s GP on board convinced her to get out of the house. The incident that kind of brought it home to us that it was time to get her out of the house was the night she started to do the dishes, forgot she was doing the dishes, went downstairs to watch television, fell asleep and the next thing she knew the dry wall ceiling came crashing down on her with all the water. That s s when we knew it was time to get her out of the house. This was a flood, it could have just as easily been a fire. d) changes in judgment that increased vulnerability to financial fraud. When he was lonely he would go down to a spot where he would be able to play cards. It was a pastime that he quite enjoyed, he was never good at it even when he had good memory, and nonetheless, it was a something that was an outing for him. There were people who started taking advantage of his poor memory and really swindled him out of quite a bit of money so I ended up getting power of attorney so he could tell people that he had to talk to me first
Findings The emergent themes related to transitions in communication exchanges and social connections were a) social comparison with peers Mother came down to visit and her friend who has been a friend for f years and years and years and is the same age, was also visiting the difference between them was remarkable. And also my mother sensed it because e she started to cry b) inappropriate or socially disruptive behaviours One woman explained how her father could be verbally abusive to his personal care workers. She said There s s a level of shame that I feel with that and I m I always finding myself apologizing to the nursing staff or the admin people c) reduced recognition of family members d) caregiver exhaustion / burnout e) the death of a spouse or other key family member
Findings There were 2 emergent themes related to transitions in transportation and independent functioning a) Loss of license leads to embarrassment, frustration, and loss of independence. My father had his license taken because of his dementia I think that was one of the most psychologically damaging things that ever happened ed to him. b) Reduced capacity and/or competency for activities of daily living. I I remember giving her a bath and she just had, like one of those little stools in the bath tub and it had one of those little hand things s and she said, That feels so nice. it was just something she couldn t t do herself someone was looking after her she knew she needed help
Changes to Social Environment Implementing restricted access to credit cards, accounts and mail schemes Changed mailing address Tagged phone lines Took credit cards away Power of attorney manages all accounts Went through the PWD s mail to remove scam mail Soliciting additional support from family and friends Assisted with move to LTC facility Family members visited PWD to provide any required assistance Assisted with administrative/ financial tasks Family and friends provided caregiver with emotional support Adapt care arrangements Hired a personal care worker Respite care Communication with the Director of Care
Changes to Physical Environment Adapt living arrangements for increased care and supervision Move to a LTC facility Change floors within the long-term care facility as the need for more care increases Cognitive Coping Strategies Reframing Worked toward acceptance Changed perceptions How could I look at this another way? Knowledge / Resources Information pamphlets/ guides from organizations (Alzheimer s s Society) Attended conferences
The majority of studies in the literature highlight cognitive changes, diagnosis, institutionalization, and death. Our study highlights the sometimes subtle transitions experienced d by families, relating to increased needs for health / medical care, limitations in communication and social connections, peoples need for supervision, and reduced capacity for independent transportation and living. Families attended to cues, such as frequent or significant memory y lapses or other changes in cognitive functioning, that suggested medical assessment a (ie. diagnosis) was needed. This is often the first official transition which alerts health care professionals to engage assistive health services (Adams, 2006; Knopman, Donohue, & Gutterman, 2000; Runge et al., 2009). A key transition for the caregivers in our study was the point when they realized the PWD was no longer able to manage their own finances,, and they were at heightened risk of being taken advantage of by others. The caregivers described their strategies to change the social environment e in these situations, through legal mechanisms put in place to ensure e they could monitor or control the finances for the person with dementia, or reducing the amount of junk mail that was delivered (eg. sweepstakes notices).
Conclusions Functional needs are an appropriate way to identify key transitions in the dementia care trajectory Changes to social and physical environments, as well as cognitive reframing and informational supports were important strategies used by the families in this study across the transitions in dementia entia care Losing a drivers license, moving to LTC, and becoming vulnerable to financial fraud were key transitions that evoked an emotional response from family caregivers who had gone through these transitions Cognitive reframing was an important strategy for caregivers, to help them come to terms with the new reality of their caregiving circumstances or the expected decline in the future
Acknowledgements Lynn McCrann who assisted with data collection Faculty of Health Sciences who funded this study through an internal grant The residential facilities who assisted with distributing the flyers for this study The caregivers who participated in this study THANK YOU!