Wikipedia

Caregiver

(Redirected from Primary caregiver)

A caregiver, carer, or support worker is a person who provides care for people struggling with their everyday activities due to age, long-term illness or disability.[1] A caregiver can be either formal or informal. Formal caregivers (also known as paid caregivers) are trained professionals, including care workers at hospitals, day-care centers and nursing homes; home care and respite care providers; healthcare assistants; and other unlicensed assistive personnel.[2][3] Family caregivers (also known as informal or unpaid caregivers) are relatives or friends who provide this support.[4]

A resident of St John of God Trust and a caregiver in Halswell, New Zealand

Typical duties of a caregiver may include managing medications, helping with bathing or dressing, performing household chores, preparing meals, or managing both formal and informal health-related documentation for someone who cannot do these things independently.

Overview

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A primary caregiver is the person who takes primary responsibility for someone who cannot fully care for themselves. The primary caregiver may be a family member, a trained professional, or another individual. Depending on the culture, various members of the family may be engaged in care. The concept of the primary caregiver can be important in attachment theory as well as in family law, for example in guardianship and child custody.[5]

A person may need care due to loss of health, loss of memory, the onset of illness, an incident or risk of falling, anxiety, depression, grief, or a disabling condition.[6]

Technique

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Basic principles

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A fundamental part of caregiving is effective communication with the person receiving care, including not only giving instructions but also actively listening, showing empathy, and ensuring the patient's health needs are understood.[7] Care is given with respect for the dignity of the person receiving care while acknowledging the patient's feelings and values.[7]

The caregiver remains in contact with the patient's primary healthcare provider, often a doctor or nurse. They also help the person receiving care make decisions about their treatment, daily life, and healthcare plans while supporting them throughout the process.[8] Caregivers often provide emotional support and comfort to their patients to help them maintain psychological well-being.[9]

In addition to communication, the caregiver is responsible for managing their own hygiene, that of the patient, and their living environment.[7] Caregivers and care recipients wash their hands frequently.[7] Caregivers often assist with the patient's personal hygiene through tasks like bathing, dressing, and grooming.[10] If the person receiving care produces sharps waste from regular injections, the caregiver is tasked with managing it.[7] Surfaces in the living area are regularly cleaned and wiped, and laundry is managed to ensure a healthy living environment.[7][11] Caregivers may also help with household tasks such as cleaning and meal preparation to support daily living needs.[12]

Additionally, the caregiver helps organize the patient's daily agenda, including medical appointments, medication schedules, and daily living tasks.[7] This includes coordinating healthcare visits and ensuring medications are taken as prescribed.[9] Routine tasks of daily living are scheduled by the caregiver. In addition, the caregiver maintains access to healthcare products for the patient.[7][8]

Monitoring

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The caregiver is in close contact with the person receiving care and monitors their health.

Some people receiving care require that someone take notice of their breathing.[13] It is expected that a caregiver would notice changes in breathing, and that if a doctor advised a caregiver to watch for something, then the caregiver should be able to follow the doctor's instructions in monitoring the person.[13]

Some people receiving care require that the caregiver monitor their body temperature.[13] If this needs to be done, a doctor will advise the caregiver on how to use a thermometer.[13] For people who need blood pressure monitoring, blood glucose monitoring, or other specific health monitoring, then a doctor will advise the care giver on how to do this.[14] The caregiver should watch for changes in a person's mental condition, including becoming unhappy, withdrawn, less interested, confused, or otherwise not as healthy as they have been.[15] In all monitoring, the caregiver's duty is to take notes of anything unusual and share it with the doctor.[15]

Keeping the person mentally alert

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There is a link between mental health and physical health and mind–body interventions may increase physical health by improving mental health. These practices seek to improve a person's quality of life by helping them socialize with others, keep friendships, do hobbies, and enjoy whatever physical exercise is appropriate.[16] Physical activity has been shown to help benefit mental health in many ways, it can improve, resilience, social support, and physical health. All these ideas strongly correlate the relationship between physical activity and better mental health.[17]

Caregivers encourage people to leave their homes for the health benefits of the resulting physical and mental activity. This is supported by evidence that shows social connection and social support help improve one's mental health benefits of physical activities. Also, the interaction and sense of belonging during an activity helps their psychological wellbeing.[17] Depending on a person's situation, a walk through their own neighborhood or a visit to a park may require planning or have risks, but it is good to do so when possible.[16]

Depending on a person's situation, it may be useful for them to meet others also getting similar care services.[18] Many places offer exercise groups to join.[18] Group exercise and social participation have evidence of linking physical activity to improvement in stress and life satisfaction.[17]Social clubs may host hobby groups for art classes, social outings, or to play games.[18] For elderly people there may be senior clubs which organize day trips.[18]

Eating assistance

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Caregivers help people have a healthy diet.[19] This help might include giving nutrition suggestions based on the recommendations of dietitians, monitoring body weight, addressing difficulty swallowing or eating, complying with dietary restrictions, assisting with the use of any dietary supplements, and arranging for pleasant mealtimes.[20]

A healthy diet includes everything to meet a person's food energy and nutritional needs. People become at risk for not having a healthy diet when they are inactive or bedbound; living alone; sick; having difficulty eating; affected by medication; depressed; having difficulty hearing, seeing, or tasting; unable to get food they enjoy; or are having communication problems.[19] A poor diet contributes to many health problems, including increased risk of infection, poor recovery time from surgery or wound healing, skin problems, difficulty in activities of daily living, fatigue, and irritability.[21] Older people are less likely to recognize thirst and may benefit from being offered water.[22]

Difficulty eating is most often caused by difficulty swallowing.[23] This symptom is common in people after a stroke, people with Parkinson's disease or who have multiple sclerosis, and people with dementia.[23] The most common way to help people with trouble swallowing is to change the texture of their food to be softer.[23] Another way is to use special eating equipment to make it easier for the person to eat.[23] In some situations, caregivers can be supportive by providing assisted feeding in which the person's independence is respected while the caregiver helps them take food in their mouth by placing it there and being patient with them.[23]

Support with managing medications

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Caregivers have a vital role in supporting people with managing their medications at home. A person living with chronic illness may have a complex medication regimen with multiple medications and doses at different times of the day. Caregivers may assist in managing medications in many ways. This may range from going to the pharmacy to collect medications, helping with devices such as a Webster-pak or a dosette box, or actually administering the medications at home. These medications might include tablets, but also creams, injections or liquid medications. It is important that the healthcare providers in the clinic help educate caregivers since those caregivers will often be the ones who manage medications over the long term for an individual living with a chronic condition at home.[24]

Complications

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Discontinuing unnecessary treatment

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For some diseases, such as advanced cancer, there may be no treatment of the disease which can prolong the life of the patient or improve the patient's quality of life. In such cases, standard medical advice would be for the caregiver and patient to have conversations with the doctor about the risks and benefits of treatment and to seek options for palliative care or hospice.[25]

During end-of-life care the caregiver can assist in discussions about screening which is no longer necessary.[25] Screenings which would be indicated at other times of life, like colonoscopy, breast cancer screening, prostate cancer screening, bone density screening, and other tests may not be reasonable to have for a person at the end of life who would not take treatment for these conditions and who would only be disturbed to learn they had them.[26] It can be the caregiver's place to have conversations about the potential benefits for screenings and to participate in discussions about their usefulness. An example of a need for caregiver intervention is to talk with people on dialysis who cannot have cancer treatment and can have no benefit from cancer screening, but who consider getting the screening.[27]

People with diabetes who use caregiving services, like those in a nursing home, frequently have problems using sliding-scale insulin therapy, which is the use of varying amounts of insulin depending on the person's blood sugar.[28] For people receiving caregiving services, long-acting insulin doses are indicated with varying doses of insulin being the less preferred treatment.[28] If exceptions must be made, then use the long-acting insulin and correct with small doses of sliding-scale insulin before the biggest meal of the day.[28]

Advance care planning should note if a patient is using an implantable cardioverter-defibrillator (ICD) and give instructions about the circumstances in which leaving it activated would be contrary to the patient's goals.[29] An ICD is a device designed to prevent cardiac arrhythmia in heart patients. This is a life saving device for people who have a goal to live for a long time, but at the end of life it is recommended that the caregiver discuss deactivating this device with the patient and health care provider.[29] For patients at the end of life, the device rarely prevents death as intended.[29] Using the device at the end of life can cause pain to the patient and distress to anyone who sees the patient experience this.[29] Likewise, ICDs should not be implanted in anyone who is unlikely to live for more than a year.[30]

Behavior changes

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Caregivers can help people understand and respond to changes in their behavior.

Caregivers are recommended to help people find alternatives to using sleep medication when possible.[31] Sleeping medications do not provide a lot of benefit to most people and have side effects including causing memory problems and confusion, increasing risk of blood clots, and causing weight gain.[31] Caregivers can help people improve their sleep hygiene in other ways, such as getting regular exercise, keeping to a sleep schedule, and arranging for a quiet place to sleep.[31]

Caregivers are recommended to help people find alternatives to using appetite stimulants or food supplements high in food energy.[32] These treatments are not proven to provide benefit over alternatives but they do increase the risk of various health problems.[32] One alternative to using appetite stimulants is to provide social support, as many people are more comfortable eating when sharing a meal with others.[32] People who have trouble eating may appreciate assisted feeding from their caregiver.[32] Depending on the situation, a caregiver, patient, and physician may decide to forgo any dietary restrictions such as a low sodium diet and feed the person what they enjoy eating despite the health consequences if that seems preferable and more beneficial over using appetite stimulants.[32]

Elder abuse

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Elder abuse can include physical, emotional and financial abuse, domestic violence as well as neglect.[33] Signs of elder abuse can include depression, unusual changes in behavior or appearance, bed sores, and unexplained bruises. It is important to talk with a doctor if there are any concerns that someone may be suffering from elder abuse.

Caregiver wellbeing

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Informal caregivers

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In the case of family caregivers, caring for a loved one can have positive effects on the caregiver, for example, feelings of mutuality, personal growth, and increased family cohesion.[34][35] However, providing long-term, unpaid care for someone can also have wide-ranging negative effects on carers' physical and mental health and on their financial situation.[36][37] The sum of physical, emotional, social, and financial challenges experienced by caregivers is referred to as caregiver burden.[38]

There are various forms of support, services, and interventions that may improve the wellbeing of family caregivers. Effective measures include complementary formal services, training and psychoeducation, psychological therapies such as cognitive behavioural therapy, and support groups.[39][40][41]

Formal caregivers

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Formal caregivers such as nursing staff at long-term care facilities are at increased risk of stress and burnout.[42]

Society and culture

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Caregiving certification

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Some agencies, such as nursing homes and assisted living communities, require caregiver certification as a condition for employment. Most US states have caregiver resource centers that can assist in locating a reputable training class. In many cases, training is available at local colleges, vocational schools, organizations such as the American Red Cross, and at local and national caregiver organizations. National organizations include the National Association for Home Care and Hospice, the Family Caregiver Alliance and the National Family Caregivers Association.[43]

See also

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References

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  1. ↑ Le Toullec, Elodie; Le Gagne, Anne; Leblong, Emilie; Somat, Alain; Piette, Patrice (2025-06-13). "Assessment of burden and needs of family caregivers for the elderly, a scoping review". Frontiers in Aging. 6 1578911. doi:10.3389/fragi.2025.1578911. ISSN 2673-6217. PMC 12202512. PMID 40584229.
  2. ↑ "Support for people affected by dementia". Alzheimer's Research UK. Retrieved 2026-04-15.
  3. ↑ Bergmann, Stefanie; Peper, Julia; Bieber, Anja (2022-06-25). "The use of formal care for dementia from a professional perspective: a scoping review". BMC Health Services Research. 22 (1) 825. doi:10.1186/s12913-022-08229-2. ISSN 1472-6963. PMC 9233851. PMID 35752801.
  4. ↑ Le Toullec, Elodie; Le Gagne, Anne; Leblong, Emilie; Somat, Alain; Piette, Patrice (2025-06-13). "Assessment of burden and needs of family caregivers for the elderly, a scoping review". Frontiers in Aging. 6 1578911. doi:10.3389/fragi.2025.1578911. ISSN 2673-6217. PMC 12202512. PMID 40584229.
  5. ↑ "Primary Care-giver Doctrine Law & Legal Definition". US Legal. Retrieved 2 September 2012.
  6. ↑ Dorling Kindersley 2013, p. 10.
  7. 1 2 3 4 5 6 7 8 Dorling Kindersley 2013, p. 144.
  8. 1 2 DuPré, Athena; Overton, Barbara Cook (2024). Communicating about health: current issues and perspectives (Seventh ed.). New York, NY: Oxford University Press. ISBN 978-0-19-766430-8.
  9. 1 2 Bonavolontà, Leonluca Toro. "CAREGIVER". Aging Project Uniupo (in Italian). Retrieved 2026-02-04.
  10. ↑ Dashwood, Albert (2024-12-11). "What Does a Caregiver Do? - Caregiver Support Network". Retrieved 2026-02-04.
  11. ↑ "VitalSource Bookshelf Online". bookshelf.vitalsource.com. Retrieved 2026-01-27.
  12. ↑ Italia, Generali. "Caregiver familiare: chi è, come funziona e come affrontarne i costi | Generali". www.generali.it (in Italian). Retrieved 2026-02-04.
  13. 1 2 3 4 Dorling Kindersley 2013, p. 148.
  14. ↑ Dorling Kindersley 2013, p. 150-2.
  15. 1 2 Dorling Kindersley 2013, p. 153.
  16. 1 2 Dorling Kindersley 2013, p. 66.
  17. 1 2 3 White, Rhiannon L.; Vella, Stewart; Biddle, Stuart; Sutcliffe, Jordan; Guagliano, Justin M.; Uddin, Riaz; Burgin, Alice; Apostolopoulos, Maria; Nguyen, Tatiana; Young, Carmen; Taylor, Nicole; Lilley, Samantha; Teychenne, Megan (2024-11-28). "Physical activity and mental health: a systematic review and best-evidence synthesis of mediation and moderation studies". International Journal of Behavioral Nutrition and Physical Activity. 21 (1): 134. doi:10.1186/s12966-024-01676-6. ISSN 1479-5868. PMC 11603721. PMID 39609855. This article incorporates text from this source, which is available under the CC BY 4.0 license.
  18. 1 2 3 4 Dorling Kindersley 2013, p. 67.
  19. 1 2 Dorling Kindersley 2013, p. 45.
  20. ↑ Dorling Kindersley 2013, p. 43.
  21. ↑ Dorling Kindersley 2013, p. 46-47.
  22. ↑ Dorling Kindersley 2013, p. 47.
  23. 1 2 3 4 5 Dorling Kindersley 2013, p. 56.
  24. ↑ Ferguson; et al. (2015). "The caregiver role in thromboprophylaxis management in atrial fibrillation: A literature review". European Journal of Cardiovascular Nursing. 14 (2): 98–107. doi:10.1177/1474515114547647. PMID 25125352. S2CID 5469526.
  25. 1 2 American Society of Clinical Oncology (24 April 2014), "Ten Things Physicians and Patients Should Question", Choosing Wisely: an initiative of the ABIM Foundation, American Society of Clinical Oncology, retrieved 25 August 2014
  26. ↑ American College of Surgeons (September 2013), "Five Things Physicians and Patients Should Question", Choosing Wisely: an initiative of the ABIM Foundation, American College of Surgeons, retrieved 2 January 2013
  27. ↑ American Society of Nephrology (24 April 2014), "Five Things Physicians and Patients Should Question", Choosing Wisely: an initiative of the ABIM Foundation, American Society of Nephrology, retrieved 15 September 2014
  28. 1 2 3 AMDA – The Society for Post-Acute and Long-Term Care Medicine (February 2014), "Five Things Physicians and Patients Should Question", Choosing Wisely: an initiative of the ABIM Foundation, AMDA – The Society for Post-Acute and Long-Term Care Medicine, retrieved 10 February 2013
  29. 1 2 3 4 American Academy of Hospice and Palliative Medicine, "Five Things Physicians and Patients Should Question", Choosing Wisely: an initiative of the ABIM Foundation, American Academy of Hospice and Palliative Medicine, retrieved August 1, 2013
  30. ↑ Heart Rhythm Society (24 April 2014), "Five Things Physicians and Patients Should Question", Choosing Wisely: an initiative of the ABIM Foundation, American Association of Blood Banks, retrieved 25 July 2014
  31. 1 2 3 American Psychiatric Association (September 2013), "Five Things Physicians and Patients Should Question", Choosing Wisely: an initiative of the ABIM Foundation, American Psychiatric Association, retrieved 30 December 2013
  32. 1 2 3 4 5 American Geriatrics Society, "Ten Things Physicians and Patients Should Question", Choosing Wisely: an initiative of the ABIM Foundation, American Geriatrics Society, retrieved August 1, 2013
  33. ↑ Bergeron, L. René (30 May 2001). "An Elder Abuse Case Study: Caregiver Stress or Domestic Violence? You Decide". Journal of Gerontological Social Work. 34 (4): 47–63. doi:10.1300/J083v34n04_05. ISSN 0163-4372. Retrieved 27 April 2025.
  34. ↑ Wang, Jun; Li, Xuelian; Liu, Weichu; Yang, Bing; Zhao, Qinghua; Lü, Yang; Xiao, Mingzhao (2022-09-14). "The positive aspects of caregiving in dementia: A scoping review and bibliometric analysis". Frontiers in Public Health. 10 985391. Bibcode:2022FrPH...1085391W. doi:10.3389/fpubh.2022.985391. ISSN 2296-2565. PMC 9515975. PMID 36187613.
  35. ↑ Quinn, Catherine; Toms, Gill; Rippon, Isla; Nelis, Sharon M.; Henderson, Catherine; Morris, Robin G.; Rusted, Jennifer M.; Thom, Jeanette M.; van den Heuvel, Eleanor; Victor, Christina; Clare, Linda (29 June 2022). "Positive experiences in dementia care-giving: findings from the IDEAL programme". Ageing and Society. 44 (5): 1010–1030. doi:10.1017/S0144686X22000526. ISSN 0144-686X.
  36. ↑ Brimblecombe, Nicola; Fernández, José-Luis; Knapp, Martin; Rehill, Amritpal; Wittenberg, Raphael, Wittenberg (2018). "Review of the international evidence on support for unpaid carers". Journal of Long-Term Care: 25–40. doi:10.21953/LSE.FFQ4TXR2NFTF.
  37. ↑ Sabatini, Serena; Martyr, Anthony; Hunt, Anna; Gamble, Laura D.; Matthews, Fiona E.; Thom, Jeanette M.; Jones, Roy W.; Allan, Louise; Knapp, Martin; Quinn, Catherine; Victor, Christina; Pentecost, Claire; Rusted, Jennifer M.; Morris, Robin G.; Clare, Linda (2024-02-19). "Health conditions in spousal caregivers of people with dementia and their relationships with stress, caregiving experiences, and social networks: longitudinal findings from the IDEAL programme". BMC Geriatrics. 24 (1) 171. doi:10.1186/s12877-024-04707-w. ISSN 1471-2318. PMC 10875834. PMID 38373905.
  38. ↑ Liu, Zhu; Heffernan, Catrina; Tan, Jie (10 October 2020). "Caregiver burden: A concept analysis". International Journal of Nursing Sciences. 7 (4): 438–445. doi:10.1016/j.ijnss.2020.07.012. PMC 7644552. PMID 33195757.
  39. ↑ Brimblecombe, Nicola; Fernández, José-Luis; Knapp, Martin; Rehill, Amritpal; Wittenberg, Raphael, Wittenberg (2018). "Review of the international evidence on support for unpaid carers". Journal of Long-Term Care: 25–40. doi:10.21953/LSE.FFQ4TXR2NFTF.
  40. ↑ Walter, Erik; Pinquart, Martin (2020-11-23). Heyn, Patricia C (ed.). "How Effective Are Dementia Caregiver Interventions? An Updated Comprehensive Meta-Analysis". The Gerontologist. 60 (8): e609–e619. doi:10.1093/geront/gnz118. ISSN 0016-9013. PMID 33226434.
  41. ↑ Chen, Frank; Hu, Zhiwei; Li, Quan; Zheng, Xuan; Li, Meizhi; Salcher-Konrad, Maximilian; Comas-Herrera, Adelina; Knapp, Martin; Shi, Cheng; The STRiDE consortium (27 February 2025). "Effectiveness of Interventions to Support Carers of People With Dementia in Low- and Middle-Income Countries: A Systematic Review and Meta-Analysis". International Journal of Geriatric Psychiatry. 40 (3) e70054. doi:10.1002/gps.70054. ISSN 0885-6230. PMC 11867927. PMID 40015952.
  42. ↑ Woodhead, Erin L.; Northrop, Lynn; Edelstein, Barry (January 2016). "Stress, Social Support, and Burnout Among Long-Term Care Nursing Staff". Journal of Applied Gerontology. 35 (1): 84–105. doi:10.1177/0733464814542465. ISSN 0733-4648. PMID 25098251.
  43. ↑ "Certified Caregiver". Chron. Retrieved 2012-06-06.

Further reading

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