Talking aging care for ordinary people: Caregiving at home for dementia in three different countries

Abstract

Throughout the world ordinary people are caring for equally ordinary people who are living with dementia (PLWD). However, the care available differs in different parts of the world. In this paper we explore the caregiving that is available in three different countries: the People’s Republic of China, Cyprus and the United States of America. In China and Cyprus interviews were carried out with caregivers of PLWD who were still living in their own homes. The PLWD in the U.S. were no longer living in their own homes but had moved to residential facilities where it proved almost impossible to interview their carers. In addition, interviews were carried out with U.S. prison Corrections Officers who become de facto carers for older prisoners who develop dementia. In China most caregiving is carried out by family members who are not assisted by immigrant caregivers. Cyprus is in a period of transition. Traditionally family members, usually women, cared for PLWD, but as more women are working outside the home more of the caregiving is being carried out by migrants. In the U.S., much of the caregiving is provided by migrants, whether the PLWDs are living in their own homes or in residential facilities. Many immigrant caregivers do not speak the language of the PLWD for whom they care and receive minimal or no training for their role. Instead, they must learn on the job. We end by stressing the importance of providing training and simple resources for carers of PLWD.

Keywords

People living with dementia / Family caregivers / Non-family caregivers / Caregiving in different countries / Caregiving styles

CRediT authorship contribution statement

Constantina Demosthenous: Writing - review & editing, Writing - original draft. Boyd H. Davis: Writing - review & editing, Writing - original draft, Supervision, Project administration, Conceptualization. Lu Song: Writing - review & editing, Writing - original draft. Antonis Stylianou: Writing - review & editing, Writing - original draft. Vasso Stylianou: Writing - review & editing, Writing - original draft. Meredith Troutman-Jordan: Writing - review & editing, Resources, Data curation. Margaret Maclagan: Writing - review & editing, Writing - original draft.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Acknowledgements

We would like to thank all caregivers who have participated in the studies for their time, availability and willingness to share their experiences.

Appendix

Interview questions

Question 1: Have you ever cared for elderly people with dementia? (Follow-up questions: How many? For how long?)

Question 2: Do you find it difficult to care for them? What challenges have you encountered? (Prompt: Communication issues, non-cooperative behavior, shouting for no reason, sudden physical or verbal aggression, staying awake at night, inability to dress or eat independently, memory loss, etc.)

Question 3: In what situations do you usually chat with these elderly people? (Prompt: While dressing them? During meals? While administering medication? Whenever there’s free time?) Is it generally difficult to communicate with them, and do you have any communication tips or techniques?

Question 4: When a dementia patient is unable to speak fluently or even loses the ability to communicate, how do you communicate with them? (Prompt: Facial expressions, eye contact, gestures, touch, etc.) Are you able to understand their body language?

Question 5: Do you think chatting more with dementia patients benefits them? Why? (Many people believe they are already mentally impaired and there is no need to interact with them.)

Question 6: If a new caregiver were to take over your role in caring for dementia patients, what advice would you give them?

Question 7: If [this country] was to offer dementia-related training for caregivers, what specific knowledge or skills would you like to learn? (Prompt: Causes of dementia? Symptoms at different stages? Daily care techniques? Communication skills?)

Data availability

Data will be made available on request.

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