A Cross- cultural Exploration of Caring for Patients

A Cross- cultural Exploration of Caring for Patients with Dementia of the Alzheimer’s Type Gene Marsh, RN, Ph. D Associate Professor Agatha Quinn, RN, Ph. D Associate Professor School of Nursing University of Colorado Health Sciences Center

Background Health care providers and policy makers have a responsibility to investigate and understand the physical and mental health, social, and economic impact on long term caregivers. Building knowledge and generating a theory of caring for individuals with Dementia of the Alzheimer’s type (DAT) may reveal essential knowledge for developing supportive, cost feasible, health care delivery structures within communities. The problem is not unique to the United States and insight may be gained by comparing international health care systems. This study explores and illuminates the contexts of care between DAT caregivers in the USA and UK.

Study Aims 1. To explore the process of family and health care professional caregiving for individuals with dementia of the Alzheimer’s type (DAT) 2. To explore the impact of the caregiver role on the quality off life of family caregivers 3. To examine the relationship among patient functional status, caregiver quality of life, daily hassles, and demographic characteristics 4. To identify the health care service delivery strengths, limitations and needs for DAT patients from the perspective of family caregivers and health care professionals 5. To cross-culturally compare and contrast the processes and impact of caregiving and health care delivery needs of DAT patients and their caregivers

USA Caregiver Sample (n = 16) Gender Male Female 5 (31. 2%) 11 (69. 8%) Relationship to patient Spouse 13 (81%) Daughter 3 (19%) Range (years) Age 57 - 93 Patient age 60 - 94 Years of caregiving 1. 5 - 20 Mean (years) 68. 4 76. 1 8. 1

UK Caregiver Sample (n = 14) Gender Male Female 3 (21. 4%) 11 (78. 6%) Relationship to patient Spouse 9 (64. 3%) Daughter 4 (28. 6%) Friend 1 ( 7. 1%) Range (years) Age 50 - 84 Patient age 67 - 88 Years of caregiving 1. 5 - 9 Mean (years) 68. 8 80. 2 4. 0

Design: Exploratory-descriptive Method: l l l Grounded Theory Participant interviews (USA = 16; UK = 14) Interviews recorded and transcribed Substantive coding by site (different researchers were used for interviews and data analysis by site) Emergent themes extracted Matrix analysis for cross-site comparison

Emerging Themes: Caregiver’s Philosophy USA “Well, you’ve got to make a decision. Are you willing to give or not? There is no half way about it, you’ve either got to do it or you don’t. If you’re going to do it then damn it do it right to the best of your abilities. ” UK “Look, you’ve got to deal with it, you’ve got to accept that this is what you’ve got in life, but it’s not easy. ” “I can so easily have a damn good cry and then I have to say look, come on , you’ve got to get on with it. But I think having a good cry helps. ”

Emerging Themes: Creative Coping “I feel as though things are sent to people that can cope. ” USA l One woman bought a home and created a boarding home for 4 DAT patients including her mother so that she could still care for her l A participant made hand held cards to alert public that patient’s behavior was because of Alzheimer’s disease UK l British wives sat their husbands in the garden and had them close by while they themselves enjoyed gardening l One man bought a computer and e-mails his children l One wife sews crafts. Her husband watches. Annually she arranges a week of respite care, has a booth at craft fairs, sells her crafts, and communicates with others.

Emerging Themes: Worries About the Future USA l Financial burden on family - expensive day care and long term care costs l Difficulty relinquishing care to others l Who will care for their loved one if something happens to them? UK l Becoming frail and being unable to provide care l Relinquishing caregiving role to a nursing home l Who will care for their parent if they are away or if something happens to them?

Emerging Themes: Loss USA “ I don’t have a freedom…you don’t have a freedom to do what you want at the spur of the moment, when you want, you know the ball and chain…Freedom is everything, this is what this country is founded on, is freedom. ” UK “I’ve lost my dancing partner. ” “Freedom, yes personal freedom to go out when I want. . . I don’t leave her in the house ever…Freedom to go on holidays. . . I couldn’t go when she’s in a home here, I couldn’t.

The Highway of Life “The final chapters of God’s plan for myself are yet to be written. It is known that I have received more than my share of the fruits of life and can have no regrets no matter what befalls me. God’s plan calls for me to play a major role in the remainder of my wife’s life, and that I will be judged on how well I perform on this highway of life. It is with faith in the almighty that I pray to give me the patience , the courage, the wisdom, the understanding, the health, the love, and the perseverance to deal with whatever my wife needs. Only time will tell what road I travel and how well I bear up. ” Husband-caregiver Colorado, USA

Another Day Another day begins again and soon the questions start, Patiently I answer though wishing to depart. The questions always are the same, The first I know so well, This room that once knew laughter becomes a sort of Hell. “Where am I? ” Starts the morning, bewildered is her face, I answer “We are home, Mum, ” as she fingers hankie’s lace. She shouts at me in anger, “Of course we don’t live here, ” I swallow hard and bite my lip as I blink away a tear. A second question’s on its way as she sharply turns her head, Where’s your dad? . . as he gone out? ” Should I tell her he is dead? I never have, I can’t be cruel, though tired is my mind I look for some distraction which lately I can’t find. I’m running out of patience, I’m exhausted by the fight. Dementia’s taunts will rule the day and dominate the night But I must endure, I know I must as the day gets in its stride Mum didn’t choose this marriage, To be dementia’s bride. Margaret Morley (by permission) Daughter-caregiver Sheffield, England