Formal and informal caregiving

Before starting this Chapter, please think of the answers to the following questions.

Who are the caregivers? What will you encounter if you were a caregiver? What are the challenges or rewards in the caregiving journey? How could you manage the caregiving journey? What are the coping strategies for caregiver stress?

Do you get the answers?

You may interest to know more about caregivers. The below videos will help you to understand more about it.

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Am I a Caregiver?


Plan for the Future Early


Caregivers Stress


Caring for Others and Yourself

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After watching the videos, could you reflect on the following questions again?

Who are the caregivers? What will you encounter if you were a caregiver? What are the challenges or rewards in the caregiving journey? How could you manage the caregiving journey? What are the coping strategies for caregiver stress?

You may realize that the caregiver role can be varied in supporting the care recipient. A caregiver may be a daughter, spouse, granddaughter, health care professional, domestic helper, friends or even a neighbor. The terms "carer" and "caregiver" are used interchangeably.

If a person suffers from chronic illness and needs constant care at home, most of the caregivers will be family member or the loved one. Taking care of a needy person is not easy which may affect your daily living, your health or even the future life plan. You may feel stressed or exhausted no matter you are trained or non-trained caregiver. Caregiving can be challenging yet rewarding. Therefore, to understand the caregiving journey and know how to support the care recipients and their caregivers are important.

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What is "Caregiving"?

In general, the term 'caregiver' refers to anyone who provides physical, emotional, financial, or logistical support to someone with a disabling condition or chronic illness. Zarit & Edwards (1999) stated that caregiving is "the interactions in which one family member is helping another on a regular basis with tasks that are necessary for independent living."

Caring for loved one is associated with rewarding, including satisfaction, personal growth and personal fulfillment; however, the role of being a caregiver can be demanding physically, psychologically, socially and financially as well as role conflicts and relationship difficulties related to caregiving. The impacts of caregiving will be further discussed in Chapter 2.

Caregiving is influenced by:

• 1. relationship of caregivers to the care recipient
• 2. gender of caregivers
• 3. types of disease of care-recipient

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The roles of caregivers

Caregiving takes many forms which includes: assisting in activities of daily living (ADL) and instrumental activity of daily living (IADL) accompanying care recipients to medical appointments providing financial assistance providing emotional support

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Different types and terms of caregivers:

Do you recognize different terms related to caregiving?

Care recipient

• may have different levels of disability or suffering from chronic or acute illnesses (e.g. dementia, stroke, cancer) or may just need a little assistance with basic daily tasks (e.g. paying bills, shopping, preparing meal, attending medical appointment, taking medication, etc.).
• caregiver assists in different ways to fulfill the care recipient's needs.

Formal caregiver

• provides help with formal training.
• professional caregivers (e.g. doctors, nurses, therapists) who has formal professional training to provide care and get paid.
• may work in the hospitals, health care agencies or non-governmental organizations to provide assistive support. Some of them are also providing homebased services for the needy older adults.

Informal caregiver

• refers to anyone who takes care of another person in need without formal training and without paid.
• also called "the invisible patient" as they are often forgotten, and their needs are neglected.

Family caregiver

• is a kind of informal caregiver.
• refers to those who take care of their loved one at home without paid.
• It's not uncommon for a family member who are taking care of other family members may not realize that they become an informal caregiver. They just take up the caregiver roles when their family members unable to take care of themselves because of various reasons such as dementia, after an acute illness, discharged from hospital because of operation or deterioration of chronic illness.
• Different types of family caregivers:
  • Primary informal caregivers are those in the care-recipient's network who were giving the most assistance with activities of daily living or instrumental activity of daily living to the recipient.
  • Domestic helper is also a caregiver if she is hired to work at home to take care of the disabled family members. In Hong Kong, it's an increasing trend in hiring foreign domestic helpers to take care of older persons. In 2016, the number of households with older adults had foreign domestic helpers was about triple the figure in 2006 (Census and Statistics Department, 2018). This group of caregivers is playing an important role in supporting the families and cannot be neglected.
  • Older spousal caregiver refers to those who take care of their spousal at home without paid and formal training. As a result of the changing family structure and population ageing, the number of older spousal caregivers is increasing which aroused the society attention. The change of political status in Hong Kong in recent year was preceded by a wave of out-migration of younger generation, resulting in putting older parents living alone in Hong Kong. There is increasing trend for older adult living with older spouse, the younger family members may immigrate to other countries, older parents may be leave unattended. The society is alerted and supporting those families.
  • Long distance caregiver refers to the person who is taking care of the loved one but living in another country. Recently a lot of people are moving to other countries and leaving their older parents in Hong Kong. Some may have siblings or relatives or friends to look after their older parents, but some may be the only child that will need community support services for their older parents.

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Prevalence of caregiving

There is no official statistic about caregivers in Hong Kong. However, according to the Thematic Household Survey Report No. 40 (Census and Statistics Department, 2009), which reported that out of 1,129,900 older adults, 24.8% of them needed assistance from others in their daily living. Among 280 500 older persons who needed assistance from others in their daily living, 47.6% had caregivers. Of this group of older adults with caregivers, 37.3% had their children as the major caregiver, 26.3% had their spouses and 25.6% had domestic helpers / nurses as the major caregiver.

According to the Census and Statistics Department, Hong Kong Special Administrative Region (2021):

• At least 204,200 disabled person and 248,000 people with chronic illnesses needed other person taking care of their daily living.
• Among those 204 200 persons with disabilities, 28.7% were taken care of by their children/son-in-law/daughter-in-law, 28.2% were their domestic helpers, 20.7% were their spouses and 15.0% were their parents.
• Among those 248 000 persons with chronic diseases, 31.9% were taken care of by their children/son-inlaw/daughter-in-law. 28.9% were their spouses, 24.5% were their domestic helpers and 7.9% were their parents.
• The median usual hours of caring services provided by the carer per week to those persons with disabilities and those persons with chronic diseases were 42 hours and 35 hours.

The Hong Kong Council of Social Services (2021) conducted a caregiver survey with 719 caregivers. Findings:

• more than 70% of the interviewed caregivers were female.
• about half (52.2%) were 55 years old or above.
• more than 30% (36.9%) were 35 to 54 years old and about 10% (10.9%) were aged 34 or below.
• about half of the caregivers in these two age groups, aged 34 or younger, and those aged 35 to 54, were employed caregivers. They were feeling great stress because they had to take care of their needy family member while working a full time or part time job.
• caregivers spend more time in caring than those in foreign countries:
  • spend two to three hours less on leisure and sleep than the average Hong Kong people.
  • the weekly care hours of working caregivers are higher than the median working hours of 44 hours per week for Hong Kong people, and the number of non-working caregivers is as high as 80 hours per week, which is almost twice the working hours in Hong Kong.

According to Census and Statistics Department (2023) report "2021 Population Census Thematic Report: Older Persons", in 2021, the number of domestic households with elderly members:

• in 2011, the number of such households grew by 52.6% from 668,621 to 1,020,356.
• its share among all domestic households rose from 28.2% to 38.2% during the same period.
• there was a significant increase (in both number and share) in domestic households with elderly members.

Among all persons aged 60 and over living in domestic households in 2021, 16.6% (330,164 persons) required long-term care. The proportion of persons requiring long-term care:

• aged 60 to 69, 18.7%,
• aged 70 to 79, 27.9%
• 80 and over, 53.4%

The proportion of older women requiring long-term care was 19.8%, higher than the corresponding proportion for elderly men (13.1%). It is worth noting that female outnumbered male for all age groups among persons aged 60 and over with long-term care needs.

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Challenges in caregiving

• Increasing population ageing, increasing demand of caregiving.
• Short stay in hospital and age-related frailty, informal caregivers are playing the key roles to deliver long-term care at home.
• Female and male caregivers are facing different challenges.
  • Female caregivers being the predominate caregiver having a competing role play.
    • Refer to the previous video, Ling is playing different roles and is struggling in the caregiving role and as a working mom. She has her job duty in workplace and is working as a care coordinator, a daughter, a mother who is feeling frustrated and exhausted.
  • Male caregivers are increasingly taking up their role in caregiving.
    • Social norm - caregiving role is usually perceived as feminized.
    • Hidden caregiver.
    • Uncomfortable with hands-on personal care.
    • Less open up to others they feel stressed or overwhelmed by caregiving responsibilities.

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Challenges for formal caregivers

Unsatisfactory working conditions Workforce shortage with high turnover rate Overwhelming workload Low job satisfaction High physical and emotional demand Challenging care recipients Insufficiency governmental funding Lack of training and resources Li & Song, 2019

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Challenges for informal caregivers

Lack of training and knowledge. Limited carer support services and long waiting list. Shortage of manpower and space while family carers are often challenged by an overwhelming care burden. Caregivers has insufficient information about the community care services. Caregivers are the vulnerable group who are at-risk for multiple and serious physical and mental health conditions. Caregivers have multiple, varied, and serious unmet needs which is not being addressed. Family caregivers are experiencing significant burden. Li & Song, 2019

Let's move on to Chapter 2 to know more about carer stress, caregiver burden and burnout.

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Reference

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- End of Chapter 1 -

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Caregiver burden, stress and burnout

Caring for loved one is associated with rewarding, including satisfaction, personal growth and personal fulfillment; however, the role of being a caregiver can be demanding physically, psychologically, socially and financially as well as role conflicts and relationship difficulties related to caregiving.

Caregiver stress is caused by the ongoing emotional and physical strain of caregiving. Stressed caregivers may experience fatigue, anxiety and depression.

Caregiver burden is the level of multifaceted strain perceived by the caregiver who provide long term care for their chronically ill, disabled, or older family member (Kazemi et al., 2021; Liu et al., 2020). It is a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience.

Caregiver burnout is a state of physical, emotional and mental exhaustion. Burnout can happen when you are unable to tolerate or manage the caregiving stress and can't get help or without support. You may also feel guilty because of your inability to care for your loved one.

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Impacts of caregiving

• Physical health e.g. new or worsening health problems
• Mental and emotional health e.g. anxiety, depression, irritable
• Isolation and loneliness
• Relationship difficulty e.g. conflicts with the family members
• Financial problems e.g. medical expenses, home modifications, transportation
• Employment impacts e.g. quit job, retired early, take up more job

A local study in dementia caregiving revealed that 73.7% of working caregivers were exposed to high levels of caregiver stress, 46.2% had symptoms of depression and 38.6% experienced family conflict (The HSBC Life (International) Limited, the Sau Po Centre on Ageing at The University of Hong Kong & the Women's Foundation, 2020).

The care burden of dementia family caregivers is much greater than that of other family caregivers. They are more likely to experience:

• high level of care involvement
• higher level of stress and low level of self-efficacy
• higher level of social, physical and emotional strain
• poorer mental health and physical health

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Male caregivers vs female caregivers

Female caregivers:

tended to report higher levels of depression, anxiety, and general psychiatric symptomology, and lower level of life satisfaction than men caregivers spent more time on caregiving than men in terms of the number of caregiving tasks performed tended to be exposed to greater caregiving demands than men, especially in terms of time spent on caregiving, and the performance of hands-on, day-to-day caregiving activities experienced higher burden than men

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Caregivers at high risk of caregiving burden

long and intensive caregiving tasks history of domestic violence behavioral disturbance of care recipients lack of recognition and support from carers' immediate circle caregiving for multiple dependents with disabilities having suicidal thoughts and/or murder-suicide thoughts (The Hong Kong Polytechnic University Consulting Team,2022)

During the COVID-19 pandemic, the mental health of carers was affected tremendously due to the partial disruption of community services and social isolation measures.

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Significant factors associated with a higher care burden

being a spousal carer female lower income level having a medical diagnosis of emotional issues cancer, diabetes, or poorer perceived health status (The Hong Kong Polytechnic University Consulting Team, 2022)

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Warning signs

Caregiver stress	Caregiver burnout
Anxiety, depression, irritability Feeling tired and run down Difficulty sleeping Overreacting to minor nuisances New or worsening health problems Trouble concentrating Feeling increasingly resentful Drinking, smoking, or eating more Neglecting responsibilities Cutting back on leisure activities Avoiding social interaction	Have much less energy Tend to catch every cold or flu Constantly exhausted, even after sleeping or taking a break Neglect your own needs, either because you're too busy or you don't care anymore Life revolves around caregiving, but it gives you little satisfaction Have trouble relaxing, even when help is available Increasingly impatient and irritable with the care recipient Helpless and hopeless

Source: Leeza's Care Connection

https://leezascareconnection.org/resources/im-new-caregiving-now-what-2-2/preventing-caregiver-burnout

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Caregiver Assessment

Why should we assess family caregivers?

• To determine if the caregiver is able/willing to assume care responsibilities and the care recipient is willing to accept care.
• To identify care needs and caregiving issues.
• To create a personalized care plan to meet specific and changing needs.
• To improve caregivers' understanding of their role and what they need to know to carry out tasks.
• To empower family caregivers to make informed decisions of care options and link caregivers with appropriate community services in order to improve outcomes for caregivers and care recipients.

Who should conduct the family caregiver assessment?

Preferably, both caregiver and care recipient are assessed by the same assessor together or separately. Coordinated assessment by multi-disciplinary professionals can also be adopted.

A range of professionals can conduct a caregiver assessment including:

• Social Workers
• Care Managers
• Nurses
• Physicians
• Rehabilitation Professionals i.e., Physiotherapists, Occupational Therapists, Speech Therapists

Who should be assessed?

• Those who are involved in caregiving should be assessed.
• Identify those involved in caregiving but do not know they are caregivers.
• Be aware that when multiple family members are involved in caregiving, conflict resolution may be necessary to sort out roles and feelings.

Assessment Process

Assessment can be conducted by face-to-face, telephone, self-administered, electronic, structured interview. Periodic reassessment is strongly recommended to identify changes in care situation. It can also be done on a need basis. Preparation:

Assessor should:

• Identify who is the primary caregiver and who are involved in caregiving.
• Understand the purpose of assessment.
• Choose appropriate assessment tools and familiar with them.
• Use active listening.
• Non-judgmental attitude.
• Adopt professional communication skills to engage with caregivers.
• Be sensitive to differences in framing questions around culture, religion, age, etc.
• Empathize with the caregiver.
• Dealing with emotional content.
• Structure the interview guide and recognize what you know, what you do not and when to hand off.
• Disseminate appropriate and clear information and refer to suitable services as needed.

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Domains of Assessment

• Background on the caregiver and the caregiving situation including sociodemographic information of caregivers, household composition and income, family relationship but not limited.
• Caregiver's perception of health and functional status of the care recipient.
• Caregiver's values and preferences with respect to everyday living and care provision.
• Health and well-being of the caregiver.
• Consequences of caregiving on the caregiver (challenges and benefits).
• Care-provision requirements (skills, abilities, knowledge).
• Resources to support the caregiver. Utilizations of community support services.

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Assessment tools

A well-structured professional assessment is important to collect necessary information to identify caregivers' needs and create a tailor-made care plan that can improve outcomes for caregivers and care recipients. Standardized assessment tools are used to obtain information. Measures must have good psychometric properties. There are a few examples such as Zarit Burden Interview, Caregiver Strain Index, Caregivers Burden Inventory etc.

Zarit Burden Interview (ZBI) 沙氏負荷量表

• well-known measure of caregiving burden in caregivers of patients with dementia.
• multidimensional aspects including physical, emotional, financial and social burden and the relation with the care receiver.
• considered as the first burden scale to evaluate the subjective impact of caregiving.
• was primarily designed to be used in research and program evaluation purposes.
• consists of 29 items but was shortened to 22 items, rating in each item by a 4-point Likert scale (never to nearly always; 1-4).
• a higher score indicates a higher burden.

Caregiver Strain Index 照顧者負荷指數

• multi-dimensional burden scale.
• consists of 13 items such as feeling of inconvenience, confinement, adjustment, competing demand, upsetting behaviors, needing the care receivers to be different, feeling overwhelmed sleep disturbance, and physical and financial strain.
• in Yes/No format (Yes=1 and No=0) & sum up the scores.
• score of 7 or greater indicating a high level of stress.

Caregivers Burden Inventory 照顧者負擔量表

• multi-dimensional burden scale.
• was designed specifically to assess caregivers of cognitively impaired older people.
• Consists of 24 items in 4-point Likert scale ranging from never (0) to always (4)
• 24 items divide into 5 factor subscales (physical burden, time dependence burden, developmental burden, social burden and emotional burden).
• a higher score indicates a higher burden.

Assess caregiver distress related to behavioral and psychological symptoms

• Neuropsychiatric Inventory Questionnaire (NPI-Q)
• Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD)

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Assessments for psychiatric morbidity

• Global rating of mental health
• Center for Epidemiological Studies the–Depression Scale (CES-D)
• Geriatric Depression Scale
• General Health Questionnaire
• State Trait Anxiety Inventory (STAI)
• Structured clinical Interview for DSM IV

Assessments for physical morbidity

Global physical health ratings Physical symptoms index Objective physiological parameters, e.g. blood pressure and heart rate Health service utilizations, such as, physician visits, aggregate use of health services, and drug utilization Health related behaviours, including alcohol consumption, smoking behavior, sleep, and eating behavior/nutrition

Assessments for care recipients

Background and medical history ADL IADL Health and mental status

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Indicators for positive outcomes

Uplifts Caregiving satisfaction Rewards Gratifications Finding meaning through caregiving Benefits Positive affect Life satisfaction

Positive Aspects of Caregiving (PAC)

• assess the perception of benefits within the caregiving context, such as feeling useful, feeling appreciated, and finding meaning.
• nine-item scale, on a five-point Likert scale (agree/disagree).
• scores ranged from 9 to 45, with higher scores indicating more positive caregiving appraisals.

Caregivers undergo significant stress or burden in the caring process. If we did not handle stress properly, caregivers may experience burnout and do harmful actions which lead to elder abuse.

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Elder Abuse

Case story - Elder Abuse case story

The 45-year-old son is the main caregiver who is living with his 75-year-old frail mother. He confessed to repeatedly slapping his mother because she constantly yelling at night for toileting. Sometimes the two got into arguments about the minor family chores. He stressed "I just lost my temper at the way my mother talked to me!"

In your daily practice, did you notice any suspected abused case?

How could you help?

Elder Abuse

Elder abuse is happening worldwide and is a public health issue (WHO, 2022). Elder abuse is a complex issue. Older adults are reluctant to report elder abuse because most of the cases are abused by their family members. Older adults are vulnerable group who are living with disability and depending on their family members or caregivers' assistance in daily livings. The abusers may be the health care workers in the residential care homes. Or they may even have close relationship with the older adults.

Myths of Elder Abuse

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Definition of Elder Abuse

Elder abuse is a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person. This type of violence constitutes a violation of human rights and includes physical, sexual, psychological and emotional abuse; financial and material abuse; abandonment; neglect; and serious loss of dignity and respect (WHO, 2022).

In Hong Kong, elder abuse refers to the commission or omission of any act that endangers the welfare or safety of an elderly person. Usually, the elderly person being abused and abuser are known to each other, or abusers are responsible for the care of the elderly person being abused (SWD, 2022).

We believe that everybody has the right to survival, freedom and personal safety, and the right to obtain basic provisions for living. No one, including elderly persons, should be treated with cruelty, inhumanity or insult.

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Prevalence

Social Welfare Department (2022) has periodical report on the statistic of abuse cases. The 'Procedural Guidelines for Handling Elder Abuse Cases' was reviewed and updated in 2021. Based on the information collected by the Central Information System on Elder Abuse Cases, the statistics on newly reported elder abuse cases for the period from January to September 2022 are as follows:

Type of Abuse and Incident Being or Not Reported to Police

Type of Abuse	Reported to Police		Not Reported to Police		Total
	No. of Cases	%	No. of Cases	%	No. of Cases	%
Physical abuse	144	72.4%	43	75.4%	187	73.0%
Psychological abuse	23	11.6%	7	12.3%	30	11.7%
Neglect	0	0.0%	0	0.0%	0	0.0%
Financial abuse	10	5.0%	0	0.0%	10	3.9%
Abandonment	0	0.0%	0	0.0%	0	0.0%
Sexual abuse	3	1.5%	1	1.8%	4	1.6%
Others	0	0.0%	0	0.0%	0	0.0%
Multiple abuse	19	9.5%	6	10.5%	25	9.8%
Total	199	100.0%	57	100.0%	256	100.0%

Resource: Social Welfare Department, (2022). Services for Prevention and Handling of Elder Abuse.

Abuser's Relationship with Elderly Person Being Abused and
Incident Being or Not Reported to Police

Abuser's   Relationship with  Elderly Person  Being Abused	Reported to Police		Not Reported to Police		Total
	No. of Cases	%	No. of Cases	%	No. of Cases	%
Son	30	15.1%	7	12.3%	37	14.5%
Daughter	6	3.0%	4	7.0%	10	3.9%
Son-in-law	1	0.5%	0	0.0%	1	0.4%
Daughter-in-law	3	1.5%	1	1.8%	4	1.6%
Spouse/ intimate partner	144	72.4%	44	77.2%	188	73.4%
Grandchildren	1	0.5%	0	0.0%	1	0.4%
Relative	1	0.5%	0	0.0%	1	0.4%
Friend/ neighbour	2	1.0%	1	1.8%	3	1.2%
Not relative but living  together	1	0.5%	0	0.0%	1	0.4%
Domestic helper	4	2.0%	0	0.0%	4	1.6%
Staff of the agency  providing services for  the elderly person	4	2.0%	0	0.0%	4	1.6%
Others	2	1.0%	0	0.0%	2	0.8%
Total	199	100.0%	57	100.0%	256	100.0%

Resource: Social Welfare Department, (2022). Services for Prevention and Handling of Elder Abuse.

Points to note:

• The top 3 elder abuses are physical abuse, multiple abuse and psychological abuse.
• Over 22% cases were not reported to police. Perhaps it's only the tip of iceberg.
• Most of the abused cases were female.
• Most abusers were the victims' spouse and intimate partners.
• We should report any suspected abused cases in order to stop elder abuse and protect those being abused.

For latest data, refer to Social Welfare Department - Services for Prevention and Handling of Elder Abuse (swd.gov.hk).

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Types of abuse (SWD, 2022):

Physical Sexual Psychological and emotional abuse Financial and material abuse Abandonment Neglect Serious loss of dignity and respect (WHO, 2022)

Identify those at risk
Older adults who are/have:

• functional dependence/disability
• poor physical health
• cognitive impairment
• poor mental health
• low income
• living in nursing homes

During the COVID-19 pandemic, the rate of abuse of older adults had increased. Caregiver burnout may trigger elder abuse.

Lower risk of elder abuse: for those who are living alone or have social support would have lower risk of elder abuse.

Risks of becoming a perpetrator of abuse

• mental illness
• substance abuse
• financial dependency of the abuser on the victim

Prevention and Intervention

We should aim to arouse the awareness of professionals, older adults and public on the problem of elder abuse, to prevent the occurrence of abusive incident, and to encourage victims and abusers to seek assistance as early as possible so as to remedy the situations.

Risk Factors Leading to Elder Abuse

Watch for signs of abuse:

• Seems depressed, confused, or withdrawn
• Isolated from friends and family
• Has unexplained bruises, burns, injury or scars
• Appears dirty, underfed, dehydrated, over-or undermedicated, or not receiving needed care for medical problems
• Has pressure injuriesor other preventable conditions
• Recent changes in banking or spending patterns

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What should I do if I suspected elder abuse case?

If you suspect that the older adults around you are being abused, you can take the initiative to care about and listen to their needs, and encourage them to seek help and consultation from trusted relatives, friends and professionals, so that the abused person can obtain the most suitable services.

Please refer to the 'Procedural Guidelines for Handling Elder Abuse Cases (Revised 2021)' for handling of elder abuse.

• Procedural Guidelines for Handling Elder Abuse Cases (Revised 2021) (swd.gov.hk)
• Chapter 11 Appendices I - III: Reporting Guidelines, Flowchart and Data Input Form for the 'Central Information System on Elder Abuse Case'

https://www.swd.gov.hk/en/index/site_pubsvc/page_elderly/sub_csselderly/id_serabuseelder/

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Reference

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- End of Chapter 2 -

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How to Be a Cheerful Caregiver?

In previous chapters, we have learnt about what caregiving is and the various burdens of caregivers. Now, let's listen to the voice of three family caregivers. What are their challenges when looking after their loved one? How do they feel?

Sharing from Caregivers Peers

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Reflection 1

Caring for a person with dementia is unlike caring for someone with any other condition or disability, due to the complex, unpredictable and progressive nature of dementia. Refer to the sharing, there's no doubt that the caregivers felt high level of stress.
Could you identify their common challenges?

Common Challenges that Caregivers of Dementia Person Face:

• Psychologically exhausted caused by countless sleepless nights due to wandering and a never-ending list of concerns.
• Physically exhausted caused by demanding caring tasks of basic needs.
• Stopped socializing and neglected own health caused by round-the-clock caring tasks.
• Frustrated emotion caused by behavioral and psychological symptoms (BPSD) of dementia e.g. agitation, aggression, hallucination.
• Guilt feeling when recognizing the need for additional help, e.g. the decision on long term residential care.

❖  To further explore the caregiving challenges and tips about taking care of a person with dementia, please go to The demand on your care—Care of a PERSON with dementia.

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Reflection 2

From the sharing, the wife of Mr. Li, Ms. Chan and Ms. Kwan have also come across a period of feeling guilty. In fact, it is not uncommon for the caregivers to have guilty feeling in the caregiving journey. They may believe that they are not doing enough for their loved ones. They may feel they've failed to meet the expectations of others and themselves. There can also be tremendous guilt when they have to place their loved one in residential care homes. Do you have any advice for them to cope with the caregiver guilt?

Ways to cope with guilty feeling

• Acknowledge the guilt.
• Accept mistakes. Encourage them to recognize their strengths and don't focus on the negative.
• Admit the limit of informal caregiving. Set the boundaries and seek help when necessary. The choice of residential care service may be a way out. It's not necessary to feel guilty. Not to view it as a failure.
• Start the long-term care planning earlier which can help to identify the limitation of the caregivers and find ways to fill the gaps of caregiving.
• Build up a healthy coping mechanism. (Will be further discussed in this chapter)

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Reflection 3

If you were the healthcare professional who was responsible for the discharge of Mr. Li's father-in-law who suffered from stroke, the mother of Ms. Chan with dementia and broken wrist after fall and the mother of Ms. Kwan with dementia and fracture after a traffic accident, apart from the pharmacological treatment, medical follow-up and laboratory investigation, do you have any advice for the caregiver in your discharge plan?
Can you try to put Mr. Li and his wife, Ms. Chan and Ms. Kwan into the Stress-coping Model before creating your plan?

Stress-coping Model

• According to the cognitive phenomenological theory of psychological stress, behavioral, physiological and psychological responses are the results of primary and secondary appraisal process between the person and the environment.
• Primary and secondary appraisals help to determine if situations are irrelevant, beneficial or threatening by taking into consideration of personal and environmental factors and coping mechanisms.

Coping strategies are always crucial to turn the caregivers from "Stress" to "Cheerful". After passing through the difficult period of caregiving, caregivers Mr. Li, Ms. Chan and Ms. Kwan looked back and shared some tips on coping strategies to us.

What Caregiver Peers Have Learned

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In this chapter, let's learn about how to be a cheerful caregiver! Here we advise 8 coping strategies for caregivers.

8 Coping Strategies for Caregivers

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1. Prioritize "self-care"

1.1 Why "self-care"?

We always heard that "The care you give to yourself is the care you give to your loved one".
Unfortunately, research has shown that family caregivers struggle with promoting their health. (Acton, 2002)

Caregivers:

• have lower levels of self-care.
• are less likely to engage in preventive health behaviours.
• always neglect their own health and well-being as responsibilities and tasks pile up. (Schulz, et al., 1997)

Without a good "self-care", not only physical health will be negatively affected, but also leads to irritability and inappropriate anger which induces more guilt. Therefore, self-care should always be a top priority for caregivers to avoid caregiver fatigue. It helps maintain a better physical and mental condition to provide care and attention to their loved ones.

1.2 Self-care assessment

A self-care assessment often helps caregivers recognize how well they are currently taking care of themselves. As caregivers are likely too busy to manage their own health, some simple self-assessment tools can easily and instantly indicate that if they take good care of themselves or start to affect their health. It can be a good motivating factor to raise their awareness to self-care.

Quick tools:

• How Well Do You Take Care of Yourself?
• Zarit Burden Interview- assessing caregiving burden
• 【沙氏負荷量表 – 簡化版】(Chinese version)

1.3 How to take good "self-care"? To maintain well-being, caregivers should: eat well & exercise regularly. get adequate sleep. have regular check-ups. avoid self-medicating with alcohol or drugs. schedule "Me Time" to do what you want that brings you a bit of joy. build up healthy coping mechanism for stress. Remember, being kind to yourself builds the foundation to self-care.

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2. Build resilience

Resilience is the process of adapting well in the face of adversity, trauma, threats or other significant sources of stress.

(American Psychological Association, 2020)

• It relates to the way people think and behave in response to these life adversities.
• Resilience is not something people are born with.
• We may develop and strengthen it through learning.
• Especially during the COVID-19 pandemic, healthcare workers who are trained in resilience have less anxiety, depression and stress related symptoms. (Baskin & Bartlett, 2021)

10 strategies to build resilience: Make connections. Avoid seeing crises as insurmountable problems. Accept that change is part of living. Move toward your goal. Take decisive actions. Look for opportunities for self-discovery. Nurture a positive view of yourself. Keep things in perspective. Maintain a hopeful outlook. Take care of yourself.

Further reading:
American Psychological Association. (2020). Building your resilience. https://www.apa.org/topics/resilience/building-your-resilience

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3. Develop a sense of humor

One of the best defenses of stressors is a sense of humor. Humor is an attitude, a state of mind, a way of placing in perspective the events life hands us.

Humor and laughter can: ease tension relieve fear, anxiety, anger, and depression convey goodwill defuse negative emotions relieve stress and sadness help reassert control increase flexibility in problem solving by helping you see things from another perspective perk up the immune system release natural painkillers (endorphins) in the body

To keep humor in your life: Read funny books Watch funny movies Collect funny jokes and stories Send funny cards and e-mails (humor is contagious—you might get some back!) Look for humor in the ordinary routines of your day or the unexpected mix-ups of your life

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4. Set boundaries

Setting Boundaries that Every Caregiver Must Learn

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5. Strengthen competence

5.1 Improve health literacy

Family caregivers:

• often feel unprepared to provide care, have inadequate knowledge and skill to deliver proper care, and receive little guidance from the formal health care providers.
• may not know when they need community resources, and how to access and best utilize available resources.
• should learn as much as they can about the illness so that they can understand what is happening. It's not only about knowledge, but also to learn caregiving tricks to make caregiving easier.
• can be empowered through learning more about age-related changes, and how to manage them through elder care training.

Reflection

Have you heard of the following feelings from caregivers?

Caregivers always feel:

• overwhelming when taking them to multiple medical visits.
• frustrated when they refuse medication and refuse to bathe.
• exhausted when receiving their repetitive phone calls.
• embarrassed when taking them out for meal or travel due to incontinence problem or frequent toileting.

Let's try to provide some caring tips to caregivers through learning Elder Care Training Courses and below readings.

Further readings:

Harvard Health Publishing, Harvard Medical School. (2023). Caregiving. https://www.health.harvard.edu/topics/caregiving

National Institute on Aging. (2017). Doctor's Appointments: Tips for Caregivers. https://www.nia.nih.gov/health/doctors-appointments-tips-caregivers

The Mesothelioma Center. (2023). Seniors Guide to Cancer. https://www.asbestos.com/cancer/senior-cancer-guide/

UCLA Health. (2023). Dementia Care- Caregiver Training Videos. https://www.uclahealth.org/medical-services/geriatrics/dementia/caregiver-education/caregiver-training-videos

5.2 Make good use of technology

Many experts feel that technology might help support caregivers. About half of 50+ caregivers have used at least one form of technology, software or online solution to help with caregiving. (National Alliance for Caregiving and AARP, 2020)

Includes:

• Tracked the recipient's personal health records.
• Used assistive devices for their recipient.
• Checked up on the health of care recipient using apps, video, wearables devices, or other remote monitoring.
• Searched online for support services.
• Managed prescriptions on an app or website.
• Placed an online order for groceries or household supplies for care recipients.
• Watched videos to learn how to do different care tasks for a recipient.
• Created an online or shared calendar to organize caregiving schedules or activities.
• Had a virtual or online visit with a healthcare provider for the care recipients.

Reflection

Caregivers in more demanding care situations tend to lean on technology and software to help alleviate some of the intensity that goes along with their caregiving role. Do you have any ideas for caregivers to relieve caregiving stress through gerontechnology in the community?

Let's watch the below video for more ideas!

Gerontechnology in Relieving Caregiving Stress

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6. Gain more cooperation from care recipient

Caregiving can become easier if the care recipient is cooperative.
How can you overcome your care recipient's constant refrain of "NO"?

3 ways to turn a No into a Yes:

1. Be willing to compromise. If the care recipient won't shower, will he at least agree to a sponge bath? what about asking him again when he is in good mood? → Sometimes compromise leads directly to a "yes".

2. Use the "three tries" rule.

Try three times in three different ways to turn a "No" into a "Yes".

• One, ask your mom to do something:
  "Mom, let's go for a walk."
• If she declines, wait awhile and then ask again in different ways:
  "Mom, please go out to have a walk with me."
• If she declines again, use physical touch and the offer of a reward for complying:
  Take her hand and look her in the eye. "Mom, can you go out for a walk with me? We can go to Yum Cha after that."

3. Make it easy to cooperate by offering choices.

• It's easy to say "No" to requests that seem unilateral:
  "Eat your lunch right now. I went to a lot of work to prepare this delicious food."
• It's easier to say "Yes" when you're given a choice.
  "Would you like to eat lunch at 11:30 or at noon? Would you prefer fish or chicken?"

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7. Stress management

Caregiving can be physically and emotionally exhausting. Whether you are in the profession of caregiving or taking care of a loved one, it is important to recharge your batteries. Below are some ideas for relaxation.

7.1 Abdominal breathing & muscle relaxation exercise

Breathing Exercise and Muscle Relaxation

7.2 Mindfulness

Mindfulness and Caregiving

7.3 Horticultural therapy

• relatively new noninvasive intervention in recent years.
• the process by which gardening, and plants, are used to improve both physical and mental wellbeing of an individual.
• improve memory, cognitive abilities, task initiation, language skills, and socialization.
• strengthen muscles and improves coordination, balance, and endurance in physical rehabilitation.
• improve the quality of life and reduce the depression and burden of caregivers of the older adults with dementia. (Kim, et al., 2020)

Sharing on local horticultural therapy: (Chinese only)
心靈綠洲與園藝治療
照顧者花園【照顧者專訪】園藝治療
香港園藝治療協會

7.4 Music therapy

• A way of enhancing, improving, and contributing to quality of life.
• Music is one form of therapy that can be helpful for people with dementia experiencing difficulty with memory and communication.
• A new study shows that music therapy interventions may improve social interactions between people with dementia and their caregivers. The findings indicate that music therapy may also decrease caregiver distress. (Schafer et al., 2022)

Sharing on local music therapy about caregiving (Chinese only)
照顧者花園【照顧者專訪】音樂治療
照顧者音樂自療手冊

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8. Create a personal support system

Most caregivers end up withdrawing from friends and family and feeling isolated and as if no one understands. Also, they are often reluctant to express these negative feelings for fear they will be judged by others (or judge themselves) or don't want to burden others with their problems. Support groups can be an important source of understanding and connection.

Support system may be provided in the form of:

• Physical or practical assistance (e.g. transportation, assistance with chores)
• Resource and information sharing (i.e. information on community resources)
• Emotional and physiological assistance (i.e. someone who listens to and encourages you)
• Attitude transmission (i.e. someone who helps you laugh or see things more positively)

8.1 Long-term care plan for an older adult

• What is long-term care planning for the older adult?
  A long-term care plan is a preparation for the support that the older adults and caregivers need as the health condition change. It may include:

Healthcare decision	Who handle the medical needs? What kinds of community resources available for home care? In what situation, start to consider hiring caregivers, using home service or moving to elderly home?
Living arrangement	Anyone move in to live with the older adult? Who agree to take care of the older adult? Any home modification needed?
Financial planning	What sources of money can be used to cover the long-term care? How much will be the expenses? Any ideas on the household budget plan? Any needs to prepare the will or enduring powers of attorney? Any needs for caregiver allowance subsidized by the Government?

Practical Tips for New Family Caregivers

• Planning for future
  In view of the end-of-life care planning, early discussion in the followings can be considered:
  • Advance care planning
  • Advance directives
  • Enduring powers of attorney
  • Wills

Planning for Future

Further readings:

CUHK Jockey Club Institute of Ageing. (2022). JCECC Capacity Building and Education Programmes on End-of-Life Care- EOL Resources Kit. https://www.ioa.cuhk.edu.hk/end-of-life-care/wp-content/uploads/2020/12/booklet_2022%20full.pdf

• Why create a long-term care plan?
  In view of the end-of-life care planning, early discussion in the followings can be considered:
  • Build up a good communication and understanding between older adult and family members through discussion.
  • Early planning reduces a lot of emotional frustration and burden when the older adult getting older and weaker.
  • Prepare a personal support system before the situation getting much worse.
  • If something happens, both older adults and caregivers can rest assured they have control over the future.

8.2 Community resources for family caregivers

• Increasing caregivers' knowledge about community services and how to access them can increase their sense of competence and reduce depression (Toseland, et al., 2004). Can you think of any carer support service in the community?

Community Carer Support Services

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After going through the 3 chapters...

I think you should have a more thorough understanding on carer stress and coping strategies. Referring to the reflection at the beginning of Chapter 3, can you provide guidance and support to the family caregiver when you discharge the case with a constructive framework of caregiver engagement, enablement and empowerment?

Caregiving journey is challenging yet rewarding. Here are some suggested guiding questions for you.

Caregiver engagement	How to motivate them to participate in the caring task? How to make them build up a good self-recognition and enjoy the positive rewards in caregiving?
Caregiver enablement	How to equip them with appropriate knowledge, skills, and abilities to perform the daily care tasks? Do they have a supportive environment to back up whenever in need? Do they get familiar with the resources available in the community?
Caregiver empowerment	Do they build capacity in problem-solving? Do they develop a comprehensive long-term care planning? If not, how to make them start the conversation? Are they capable to manage the challenges of caregiving?

However, caregiver burden is not limited to informal caregivers. Formal caregivers who provide care to a vulnerable population of older adults with chronic medical conditions are stressful too, e.g., looking after people with dementia in residential homes, seriously ill patients in cancer units and dying patients in end-of-life care units. As discussed in Chapter 2, high level of caregiver stress may predispose to elder abuse.

Therefore, as a social and healthcare professional caregiver, how to equip and care yourselves for the overwhelming work demands?

• Receive adequate elder care training to increase your capability to meet with the challenges.
• Get support from peers and mentors and go through reflective journaling to regain a sense of meaning, purpose and connection in life.

Care Yourself When Caring Others (For Professional)

Remember, not only your client needs
community resources, but you need too!

Get familiar with the community resources so that you could refer the needy caregivers to appropriate supporting services.

Counselling services for social and healthcare professionals:

• Oasis「心靈綠洲」
• 賽馬會「疫途有你」醫護及安老服務同工情緒健康支援計劃 (Chinese only)
• 醫護及教師資助輔導計劃 (Chinese only)
• 醫護同行情緒支援 (Chinese only)

Reflection

In this module, we have discussed the complicated challenges of caregiving and various strategies to support caregiver. However, are these sufficiently to support the caregivers? How about the public policy that can help to relief carer stress?

Here are some reflective questions for us to further investigate.

• Arouse the awareness of caregiver stress among employers?
• Promote a family-friendly workplace to support working caregivers? (e.g. family leave, flexible work arrangement, counseling service for employee…)
• Create more part-time jobs for caregivers to balance their career and caregiving?
• Enhance and extend the accessibility of respite service and home care service with Government support?

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Reference

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- End of Chapter 3 -

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Chapter 1

Chapter 2

Chapter 3

Public Seminars

為晚晴做好準備 - 生命晚期的選擇

老人痴呆症照顧：護老者減壓篇

Workshops

共創安享晚年新天地 - 認識虐老

做個健康護老者，與長者同行晚晴路

結伴同走晚晴路 - 護老者的照顧與支援

Professional courses

Informal Caregiving for Older People with Chronic Diseases

End-of-life care: advance care planning, ethical and legal issues

Dementia Caregiving: Assessment and Interventions for Family Caregivers

Community Care and Social Services for Dementia: Individual and Caregiver Perspectives