A Cross cultural Exploration of Caring for Patients with Dementia of the Alzheimers Type

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A Cross- cultural Exploration of Caring for
Patients with Dementia of the Alzheimers Type

• Gene Marsh, RN, PhD
• Associate Professor
• Agatha Quinn, RN, PhD
• Associate Professor
• School of Nursing
• University of Colorado Health Sciences Center

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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 Alzheimers 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.

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Study Aims

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

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USA Caregiver Sample (n 16)

• Gender
• Male 5 (31.2)
• Female 11 (69.8)
• Relationship to patient
• Spouse 13 (81)
• Daughter 3 (19)
• Range (years) Mean (years)
• Age 57 - 93 68.4
• Patient age 60 - 94 76.1
• Years of caregiving 1.5 - 20 8.1

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UK Caregiver Sample (n 14)

• Gender
• Male 3 (21.4)
• Female 11 (78.6)
• Relationship to patient
• Spouse 9 (64.3)
• Daughter 4 (28.6)
• Friend 1 ( 7.1)
• Range (years) Mean (years)
• Age 50 - 84 68.8
• Patient age 67 - 88 80.2
• Years of caregiving 1.5 - 9 4.0

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Design Exploratory-descriptive

• Method
• 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

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Emerging Themes Caregivers Philosophy

• USA
• Well, youve got to make a decision. Are you
  willing to give or not? There is no half way
  about it, youve either got to do it or you
  dont. If youre going to do it then damn it do
  it right to the best of your abilities.
• UK
• Look, youve got to deal with it, youve got to
  accept that this is what youve got in life, but
  its not easy.
• I can so easily have a damn good cry and then I
  have to say look, come on , youve got to get on
  with it. But I think having a good cry helps.

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Emerging Themes Creative CopingI feel as
though things are sent to people that can cope.

• USA
• 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
• A participant made hand held cards to alert
  public that patients behavior was because of
  Alzheimers disease
• UK
• British wives sat their husbands in the garden
  and had them close by while they themselves
  enjoyed gardening
• One man bought a computer and e-mails his
  children
• 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.

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Emerging Themes Worries About the Future

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

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Emerging Themes Loss

• USA
• I dont have a freedomyou dont have a freedom
  to do what you want at the spur of the moment,
  when you want, you know the ball and
  chainFreedom is everything, this is what this
  country is founded on, is freedom.
• UK
• Ive lost my dancing partner.
• Freedom, yes personal freedom to go out when I
  want... I dont leave her in the house
  everFreedom to go on holidays ... I couldnt go
  when shes in a home here, I couldnt.

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The Highway of Life

• The final chapters of Gods 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.
• Gods plan calls for me to play a major role in
  the remainder of my wifes 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

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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
  hankies lace.
• She shouts at me in anger, Of course we dont
  live here,
• I swallow hard and bite my lip as I blink away a
  tear.
• A second questions on its way as she sharply
  turns her head,
• Wheres your dad? ..as he gone out?
• Should I tell her he is dead?
• I never have, I cant be cruel, though tired is
  my mind
• I look for some distraction which lately I cant
  find.
• Im running out of patience, Im exhausted by the
  fight.
• Dementias 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 didnt choose this marriage,
• To be dementias bride.