What is Caregiver Stress?


Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient. This condition is not listed in the Diagnostic and Statistical Manual of Mental Disorders, although the term is often used by many healthcare professionals in that country. The equivalent used in many other countries, the ICD-11, does include the condition.

Refer to Caregiver and Dignity of Risk.

Over 1 in 5 Americans are providing care to those who are ill, aged, and/or disabled. Over 13 million caregivers provide care for their own children as well. Caregiver syndrome is acute when caring for an individual with behavioural difficulties, such as: faecal incontinence, memory issues, sleep problems, wandering, impulse control problems , executive dysfunction, and/or aggression. Typical symptoms of the caregiver syndrome include fatigue, insomnia and stomach complaints with the most common symptom being depression.

Signs and Symptoms

Those who are providing care for a friend or family member with a long-term illness undergo what is known as chronic stress. Caregiving has been shown to affect the immune system. It was found that caregivers to persons with Dementia particularly Frontal temporal patients were more depressed, and they showed lower life satisfaction than the comparison samples. The caregivers also had higher EBV antibody titres and lower percentages of T cells and TH cells. Caregiving has also been shown to have adverse effects on wound repair. Further, these biological vulnerabilities are also evident in younger caregivers, implying that it is not an age and caregiver stress interaction. For example, caregivers of children with developmental disabilities have been found to have lower antibody responses to vaccination compared to age and gender matched non-caregiver controls. Further, a higher level of blood pressure has also been observed in those younger caregivers compared to a control group of parents and this particularly strong for those without social support.

Symptoms include depression, anxiety, and anger. Chronic stress can create medical problems including high blood pressure, diabetes, and a compromised immune system. The impact may reduce the care-giver’s life expectancy.

Caregiver syndrome affects people at any age. For example, elderly caregivers are at a 63% higher risk of mortality than non-caregivers who are in the same age group. This trend may be due to elevated levels of stress hormones circulating throughout the body. These levels are similar to someone with PTSD. Because caregivers have to be so immersed in their roles, with day/night hours, they often have to neglect their own health. They are experiencing high amounts of stress along with grief since the health of their loved one is declining. Since their roles are changing from a partnership or mother/daughter, mother/son, etc. relationship to a caregiver and patient relationship, caregivers are turning to online forums such as the Alzheimer’s Association for support. This role change is difficult for many people to make, causing them to experience anger, resentment, and guilt. It is difficult to provide quality care in this state of stress.

The health of caregivers should be monitored in various ways. There are tests for measuring the amount of stress on a caregiver.

Caregivers are at risk for adverse effects on their health, due to emotional distress. Even after caregiving has terminated, these stressors can have long-lasting effects on the caregiver’s body due to these immune alterations.

Since caregiving can further erode the caregiver’s own health, many studies are being done to assess the risks that a caregiver poses when they assume this job and its effects on their immune functioning, endocrine functioning, risk for depression, poor quality of sleep, long-term changes in stress responses, Cardiovascular diseases, an increased risk of infectious disease, and even death. Resentment from the patient is what may lead to the depression and distress typically seen in caregivers. This anxiety and depression can then lead back into the health of the caregiver.

The World Health Organisation’s categorisation of health conditions, the ICD-11, has a category of “QF27 Difficulty or need for assistance at home and no other household member able to render care”. Its browser and coding tool also associate this condition with the term “caregiver burnout”, connecting it to occupational burnout.

Caregiver Burnout

Bodies such as the United States government’s Centres for Disease Control and Prevention, the American Diabetes Association, and Diabetes Singapore identify and promote the phenomenon of “diabetes burnout.” This relates to the self-care of people with diabetes, particularly those with type-2 diabetes. “Diabetes burnout speaks to the physical and emotional exhaustion that people with diabetes experience when they have to deal with caring for themselves on a day-to-day basis. When you have to do so many things to stay in control then it does take a toll on your emotions… Once they get frustrated, some of them give up and stop (maintaining) a healthy diet, taking their medications regularly, going for exercises and this will result in poor diabetes control.”


Caregiver syndrome is caused by the overwhelming duty of caring for a disabled or chronically ill person. Caregiver stress is caused by an increased stress hormone level for an extended period of time. Caregivers also suffer the grief of a declining loved one, as causing a depressive exhaustive state, deteriorating emotional and mental health. “Double-duty caregivers” are those already working in the healthcare field who feel obligated to also care for their loved ones at home. This over-exhaustion and constant caregiving role can cause an increase in physical and mental health deterioration. It is actually being thought that a part of the stress of being a caregiver is from how they feel about the job. In other words, if a caregiver does not like or want to be a caregiver, they will inflict more stress on themselves by accepting the role. Support from the religious community is directly and negatively associated with anger.


The American Academy of Geriatric Psychiatrists reports one out of four American families provide care for a family member over the age of 50. By 2030, the US Census Bureau estimates a population of 71 million Americans over 65. In the UK, over 450,000 dementia patients are cared for at home. Nevertheless, over half of the caregivers (52.6%) indicated that they had some desire to institutionalize their relatives with dementia.

The American Academy of Family Physicians and the National Centre on Caregiving both believe all caregivers should be screened for stress and depression and recommend providing caregivers with their own resources to help them cope.

Since family and more often one member most assumes the primary caregiver role, these strains fall upon them. Care for those who are chronically ill is irregular, so there are not many facilities that can provide adequate care. This caregiving role is more commonly assumed by women than men. Since there are some illnesses that create a more intense need for caregiving, the caregiver is responsible for almost every aspect in the patient’s life. One of the positive aspects of caregiving for a loved one is that it can improve their quality of life, but when the caregiver is depleted of confidence, the recovery may be fostered.

Parents of children with CHD experience psychological distress such as high levels of caregiver stress, anxiety and depression.

Caregiving for military service members who have experienced a traumatic brain injury or PTSD can be very challenging as well. On 21 April 2010, the U.S. Congress passed what is known as the “Caregivers and Veterans Omnibus Health Services Act of 2010”. This act recognises the importance of caregivers who are caring for Veterans, and established a programme of assistance for them with benefits including covering counselling and mental health services under the benefits of Department of Veterans Affairs.

Issues in Health Care

Since this term, “Caregiver syndrome” is widely used among physicians, but is not mentioned in the DSM or in medical literature, physicians are not always sure how to approach the issues that arise with this syndrome. Therefore, this is not addressed frequently. In a survey given by the American Academy of Family Physicians, they found that fewer than 50% of caregivers were asked by their doctors whether or not they were experiencing caregiver stress. If this were listed in the DSM with an official diagnosis, it could possibly stigmatise those who have it. Many believe it would be beneficial for this to receive a clinical name though, so caregivers would be able to receive the appropriate resources they need. This would encourage health care professionals to develop better strategies for treatment of Caregiver Syndrome, as well as requiring health insurance agencies to pay for appropriate treatment. Some ways to improve this syndrome have been agreed upon by experts and include the following suggestions:

  • Expanding the support system for the caregiver.
  • Finding help in various sources for caregiver tasks.
  • Educating caregivers.
  • Paying caregivers salaries competitive with those paid to professional healthcare providers doing similar tasks, thus allowing them to retire from salaried jobs for companies where management is wilfully ignorant of or unsympathetic to their workers’ family caregiving burdens.
  • Encouraging the growth of telecommuting jobs that enable caregivers to work at home while caring for their patients.
  • Providing full medical benefits for caregivers and their patients.
  • Providing nursing and medical advice when needed, including home visits.
  • Providing respite services on demand.
  • Providing psychological counselling or psychiatric intervention for stress management.
  • Collecting data documenting savings for the national healthcare system made possible by home caregivers.

Although previous studies indicate a negative association between caregivers’ anger and health, the potential mechanisms linking this relationship are not yet fully understood.


Effective coping strategies such as sleep, exercise and relaxation can help prevent stress. Caregivers fare better when they have active coping skills, such as these coping interventions:

  • Mindfulness-based stress reduction.
  • Writing therapy.
  • Coping effectiveness training.
  • Stress management.
  • Relaxation training.
  • Assistive Technology.

Nearly 15 million Americans provide care that is unpaid to a person living with Dementia. Alzheimer’s disease is the most commonly diagnosed type but research says that caring for a person with Frontal Temporal Dementia is more burdensome on carers. Early onset Dementia has even greater difficulties for carers. In many cases carers are overburdened and not supported and their health suffers. In order to maintain their own well-being, caregivers need to focus on their own needs. They need to take time for their own health, and get the appropriate support that they need such as respite from their care-giving duties. Through training, caregivers can learn how to handle the behaviours that are challenging them, and improve their own communication skills. The most important thing the caregiver can do is keep the person with Alzheimer’s safe. Research has shown that caregivers experience lower stress and better health when they learn skills through this caregiving training and participate in support groups. Participating in these groups allows caregivers to care for their family members longer in their homes.


A 2014 Cochrane review found that telephone counselling can reduce symptoms of depression for caregivers and address other important caregiver needs.

Services that may be helpful to caregivers include:

  • Health services in the home.
  • Companion or chore services.
  • Day care centres for adults.
  • Respite care, time out at nursing homes, or assisted living facilities.
  • Counselling.
  • Legal advice.
  • Money management.
  • Support groups.
  • Psychotherapeutic programmes.
  • Educational programmes.

Remotely Delivered Information for Caregivers

A 2021 Cochrane review found that remotely delivered interventions including support, training and information may reduce the burden for the informal caregiver and improve their depressive symptoms. However, there is no certain evidence that they improve health-related quality of life. The findings are based on moderate certainty evidence from 26 studies.

REACH Programme

The Resources for Enhancing Alzheimer’s Caregiver Health (REACH) Project was created in 1995. This project was designed to enhance family caregiving for those who were taking care of relatives that have Alzheimer’s disease and other related dementia (ADRD). This programme includes:

  • Support groups.
  • Behavioural skills training programmes.
  • Family-based systems interventions.

This programme was designed specifically for people who are caring for a loved one with Alzheimer’s Disease or Dementia at home, and makes it possible for those with dementia to live in the own homes longer by addressing these problems of caregiver health that force the caregiver to move their loved ones to assisted-living facilities. If they can manage the challenges that come along with caregiving better, both will benefit from this. Special one-on-one training is provided for the caregiver, as well as counselling. This allows them to be more effective in their caregiving roles. They receive help directly from dementia care specialists who work with the client on an individual basis to find solutions to problems such as:

  • Caregiver stress.
  • Challenging behaviours.
  • Home safety.
  • Depression.
  • Self care.
  • Social support.

Benefits of Caregiving

Caregiving can actually provide a health advantage as well for some caregivers. Caregivers maintained higher physical performance when compared to non-caregivers. They declined less in tasks than the low-intensity caregivers and non-caregivers such as: walking pace, grip strength, and the speed with which they could rise from a chair. Caregivers also did significantly better on memory tasks than did non-caregivers over a 2-year time frame. Caregivers scored at the level of someone 10 years younger than them, although both groups (caregivers vs. non-caregivers) were both in their eighties.

While this role brings with it high costs, high rewards are also there too. This is known as “Caregiver gain”. These rewards are emotional, psychological, and spiritual such as:

  • Growing confidence in one’s ability.
  • Feelings of personal satisfaction.
  • Increased family closeness.

Women who become caregivers are healthy enough to take on the task, therefore it makes sense that they would be stronger than their non-caregiver counterparts, and remain stronger than them. The demands of caregiving cause caregivers to move around a lot, and stay on their feet. Therefore, exercise can improve both physical health and cognition. The complex thought as required by caregiving can ward off cognitive decline. This includes activities such as:

  • Monitoring medications.
  • Scheduling.
  • Financial responsibilities.

Other benefits mentioned by caregivers are that it gives their life meaning, and produces pride in their success as a caregiver. They are also able to give back to someone else. It has also been noted that psychological benefit finding can be an important way of dealing with stress. The Perceived Benefits of Caregiving scale includes 11 items with questions such as, “Has caregiving given more meaning to your life?” and “Has caregiving made you feel important?” There was an alpha coefficient of 0.7 for this scale. These benefits of caregiving have been found to be associated with improved caregiver adaptation to those who are caring for someone with dementia, end of life caregiving, and bereavement. A study done with dementia caregivers showed that finding the benefits in caregiving predicted a better response to a caregiver intervention over a time period of 12 months.

Book: An Introduction to Child and Adolescent Mental Health

Book Title:

An Introduction to Child and Adolescent Mental Health.

Author(s): Maddie Burton, Erica Pavord, and Briony Williams.

Year: 2014.

Edition: First (1st).

Publisher: SAGE Publications.

Type(s): Hardcover, Paperback, and Kindle.


Anyone who works within children and adolescent mental health services will tell you what a challenging and complex world it is. To help prepare you, the authors have produced a clear introduction to child and adolescent mental health that takes you step-by-step on a journey through the subject. Beginning with the foundations, the book explores the common mental health concepts and influences that you can expect to encounter examining topics like the difference between emotional and mental health issues and how mental health problems develop.

Book: Never Let Go: How to Parent Your Child Through Mental Illness

Book Title:

Never Let Go: How to Parent Your Child Through Mental Illness.

Author(s): Suzanne Alderson.

Year: 2020.

Edition: First (1st).

Publisher: Vermilion.

Type(s): Paperback, Audiobook, and Kindle.


How to help your child with mental illness through partnering, not parenting.

Never Let Go is a supportive and practical guide for parents looking after a child with a mental illness. Suzanne Alderson understands the agonising struggle of bringing a child back from the brink of suicide, having spent three years supporting her own daughter through recovery. Her method of ‘partnering, not parenting’ has now helped thousands of other parents through her charity, Parenting Mental Health.

Combining Suzanne’s honest personal experience with expert input from psychologists, this book provides parents with the methods and knowledge they need to support, shield and strengthen their child as they progress towards recovery. Chapters include a background to the mental health epidemic, why a new method of parenting is crucial, how to change your thinking about mental health and practical advice on solutions to daily problems including accepting the new normal, dealing with others, and looking after yourself as well as your child.

Social Support & Mental Health Needs: Carers of Those with Intellectual Disabilities

Research Paper Title

Effect of the covid-19 pandemic on the mental health of carers of people with intellectual disabilities.


The measures implemented to manage the COVID-19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers.


Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place.


Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2-3 times greater than reported in earlier pre-pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes.


Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. The researchers consider the policy implications of these findings.


Willner, P., Rose, J., Kroese, B.S., Murphy, G., Langdon, P., Clifford, C., Hutchings, H., Watkins, A., Hiles, S. & Cooper, V. (2020) Effect of the covid-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. doi: 10.1111/jar.12811. Online ahead of print.

Alzheimer’s Disease: Carers and their Mental Health

Research Paper Title

Predictors of mental health problems in formal and informal caregivers of patients with Alzheimer’s disease.


Caring for a person with Alzheimer’s disease (AD) is associated with significant mental burden e.g., depression and anxiety, and difficulties with social, familial, and professional functioning. To date, few studies have examined variables which would allow for a comprehensive and detailed study of the relationship between personal resources and caregiver health status, with a majority of studies focusing on factors that contribute to increased caregiver’s burden. Moreover, the available evidence fails to address differences in the functioning of formal and informal carers. Paying proper attention to the problems of nursing home staff can help identify important risk factors. Therefore, this study compared mental health problems in informal and formal caregivers and examined the relationship between mental resources and mental health problems in both groups of caregivers.


This cross-sectional study examined 100 formal (n = 50) and informal (n = 50) caregivers of AD patients. Personal resources were measured with the Social Support Questionnaire (SSQ), the Generalised Self-Efficacy Scale (GSES), and the Sense of Coherence Questionnaire (SCQ), while mental health was assessed with the Depression Assessment Questionnaire (DAQ) and the General Health Questionnaire (GHQ). Multivariate stepwise regression was performed separately for both investigated groups.


There were no significant differences between informal and formal caregivers in terms of psychological variables, i.e., sense of coherence, social support, self-efficacy, or mental health problems. In contrast, there were different significant predictors of mental health problems in both groups. Comprehensibility (SCQ) was a significant predictor of mental health problems measured by DAQ and self-efficacy (GSES) was a significant predictor of mental health problems measured by GHQ in informal caregivers. For formal caregivers, emotional support (SSQ) and comprehensibility (SCQ) were significant predictors of mental health problems measured by DAQ, while tangible support (SSQ) and meaningfulness (SCQ) were significant predictors of mental health problems measured by GHQ.


Personal resources are significant predictors of mental health outcomes in caregivers of AD patients. Preventive actions should therefore include assessment of factors affecting caregivers’ mental health in order to provide them with necessary care and create appropriate support groups.


Soltys, A. & Tyburski, E. (2020) Predictors of mental health problems in formal and informal caregivers of patients with Alzheimer’s disease. BMC Psychiatry. 20(1), pp.435. doi: 10.1186/s12888-020-02822-7.

Book: Dementia: Support for Family and Friends

Book Title:

Dementia: Support for Family and Friends

Author(s): Dave Pulsford and Rachel Thompson.

Year: 2019.

Edition: Second (2nd).

Publisher: Jessica Kingsley Publishers.

Type(s): Paperback and Kindle.


A comprehensive and practical guide to dementia, this book is essential reading for anyone who has a friend or relative with the condition.

This updated edition reflects new guidance on approaches to supporting people with dementia, focussing especially on the UK, and includes quotes from people with dementia as well as from family carers.

The book explores each stage of the journey people with dementia face and explains how it affects the person, as well as those around them both at home and in residential settings.

It shows how best to offer support and where to get professional and informal assistance.

Focussing on the progressive nature of dementia and the issues that can arise as a result, it gives practical advice that can help to ensure the best possible quality of life both for the person with dementia and the people around them.