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Constructing Normalcy in Dementia Care: Carers’ Perceptions of Their Roles and the Supports They Need

Journal Article


Abstract


  • Background and Objectives: People with dementia are critically dependent on their carers when accessing and utilizing

    health care. To inform health care development and delivery, we aimed to explore carers’ perceptions of their role in caring

    for a family member with dementia and to identify carers’ skills and attributes and factors impacting on care.

    Research Design and Methods: We used semistructured interviews to collect data from 25 carers supporting older adults

    with dementia. Data were thematically analyzed and the paradigm model was used to guide theory development.

    Results: “Constructing normalcy” was central to all carers did, impacted by stage of life and relationship status and

    driven by a holistic focus on their care-recipient’s quality of life. Goals guiding care were: keeping the peace; facilitating

    participation, happiness and independence; and ensuring safety. Enablers included: social contact; knowledge; and

    quality social services. Barriers included health and legal issues; symptoms of dementia; and reduced knowledge. These

    goals kept the peace and reduced stress for the cared-for person, but often at the cost of unrelenting responsibility and

    loss of carers’ original roles.

    Discussion and Implications: As carers are so critical to the access and uptake of health care of those with dementia,

    health professionals and services need to support carers in their quest to construct normalcy. Our findings provide

    guidance to assist in ensuring appropriate support and understanding of carers work in order to optimize dementia

    health care delivery.

UOW Authors


  •   Hale, Leigh (external author)
  •   Mayland, Elizabeth
  •   Jenkins, Matthew (external author)
  •   Buttery, Yvette (external author)
  •   Norris, Pauline (external author)
  •   Butler, Mary (external author)
  •   Holland, Michelle (external author)
  •   Ngocha-Chaderopa, Esther (external author)
  •   McKenzie-Green, Barbara (external author)
  •   Czuba, Karol (external author)
  •   Sezier, Ann (external author)
  •   Kayes, Nicola (external author)

Publication Date


  • 2019

Citation


  • Hale, L., Mayland, E., Jenkins, M., Buttery, Y., Norris, P., Butler, M., Holland, M., Ngocha-Chaderopa, E., McKenzie-Green, B., Czuba, K., Sezier, A. & Kayes, N. (2019). Constructing Normalcy in Dementia Care: Carers’ Perceptions of Their Roles and the Supports They Need. Gerontologist, Online First 1-11.

Scopus Eid


  • 2-s2.0-85088261788

Number Of Pages


  • 10

Start Page


  • 1

End Page


  • 11

Volume


  • Online First

Place Of Publication


  • United States

Abstract


  • Background and Objectives: People with dementia are critically dependent on their carers when accessing and utilizing

    health care. To inform health care development and delivery, we aimed to explore carers’ perceptions of their role in caring

    for a family member with dementia and to identify carers’ skills and attributes and factors impacting on care.

    Research Design and Methods: We used semistructured interviews to collect data from 25 carers supporting older adults

    with dementia. Data were thematically analyzed and the paradigm model was used to guide theory development.

    Results: “Constructing normalcy” was central to all carers did, impacted by stage of life and relationship status and

    driven by a holistic focus on their care-recipient’s quality of life. Goals guiding care were: keeping the peace; facilitating

    participation, happiness and independence; and ensuring safety. Enablers included: social contact; knowledge; and

    quality social services. Barriers included health and legal issues; symptoms of dementia; and reduced knowledge. These

    goals kept the peace and reduced stress for the cared-for person, but often at the cost of unrelenting responsibility and

    loss of carers’ original roles.

    Discussion and Implications: As carers are so critical to the access and uptake of health care of those with dementia,

    health professionals and services need to support carers in their quest to construct normalcy. Our findings provide

    guidance to assist in ensuring appropriate support and understanding of carers work in order to optimize dementia

    health care delivery.

UOW Authors


  •   Hale, Leigh (external author)
  •   Mayland, Elizabeth
  •   Jenkins, Matthew (external author)
  •   Buttery, Yvette (external author)
  •   Norris, Pauline (external author)
  •   Butler, Mary (external author)
  •   Holland, Michelle (external author)
  •   Ngocha-Chaderopa, Esther (external author)
  •   McKenzie-Green, Barbara (external author)
  •   Czuba, Karol (external author)
  •   Sezier, Ann (external author)
  •   Kayes, Nicola (external author)

Publication Date


  • 2019

Citation


  • Hale, L., Mayland, E., Jenkins, M., Buttery, Y., Norris, P., Butler, M., Holland, M., Ngocha-Chaderopa, E., McKenzie-Green, B., Czuba, K., Sezier, A. & Kayes, N. (2019). Constructing Normalcy in Dementia Care: Carers’ Perceptions of Their Roles and the Supports They Need. Gerontologist, Online First 1-11.

Scopus Eid


  • 2-s2.0-85088261788

Number Of Pages


  • 10

Start Page


  • 1

End Page


  • 11

Volume


  • Online First

Place Of Publication


  • United States