A young carer is a young person who cares, unpaid, for a person who has any type of physical or mental illness, physical and/or mental disability or misuses substances such as alcohol or drugs. The age of a young carer varies between countries. For example, in Australia a young carer is a person under the age of 25 years old, [1] while in the United Kingdom it is under 18. [2]
The roles taken on by a young carer are exhaustive and are carried out often behind closed doors on top of the normal pressures of a young persons life. The care they give may be practical, physical, and emotional. Responsibilities may range from providing practical support such as helping to cook, clean or wash, giving personal care, emotional support, providing medication or helping with financial chores.
The person they care for may be a parent, a partner, their own child, a sibling, [3] another family member, a friend or someone who does not necessarily live in the same house as them.
There are support programs to assist young carers both emotionally and financially with day-to-day tasks and making decisions. These programs offer face-to-face counselling, online programs, and phone helplines. [4] [5] [6] [7]
There are estimated to be around 260,700 young carers in Australia (more than 3% of all people under 25), 83,700 of whom live in NSW. Of these living in NSW, 11,600 (13.9%) are primary carers. Around one in ten carers in NSW (9.7%) are young carers. However, many young carers are not included in these statistics as they are likely to be hidden carers. Fifty percent of young carers are female. [8]
Research has also shown that young primary carers are more likely to be Aboriginal or Torres Strait Islanders or be of a culturally or linguistically diverse background than non-carers of the same age. [9]
In terms of geographical location, 21.5% of young carers live outside of a major city. [8]
Little Dreamers Australia is Australia's leading Young Carer organisation, and is an independent not-for-profit that supports Young Carers across Australia. [10]
Each Australian state and territory has a carer association that assists unpaid young carers and can be reached on 1800 242 636. [11] The Young Carers Network is a national website that provides young carers with information on their local support services, helpful resources and a platform to share their story and opinions. [12]
Carers NSW Young Carer Program provides information and referral support to young carers in NSW and the professionals, educators and community members who support them. [13]
According to the Carers Trust, in 2016 there were around 700,000 young carers in the UK [14] which is approximately 1 in every 12 teenagers and around 2 in every classroom. Some support programmes for young carers have been cut due to austerity. The amount of support young carers get varies from area to area and is subject to a postcode lottery. [15]
Occupational therapists (OTs) are health care professionals specializing in occupational therapy and occupational science. OTs and occupational therapy assistants (OTAs) use scientific bases and a holistic perspective to promote a person's ability to fulfill their daily routines and roles. OTs have training in the physical, psychological, and social aspects of human functioning deriving from an education grounded in anatomical and physiological concepts, and psychological perspectives. They enable individuals across the lifespan by optimizing their abilities to perform activities that are meaningful to them ("occupations"). Human occupations include activities of daily living, work/vocation, play, education, leisure, rest and sleep, and social participation.
Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.
Self-advocacy is the act of speaking up for oneself and one's interests. It is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil rights movements of the 1960s and 1970s, and is part of the disability rights movement. Today there are self-advocacy organizations across the world.
Respite care is planned or emergency temporary care provided to caregivers of a child or adult.
Inclusion, in relation to persons with disabilities, is defined as including individuals with disabilities in everyday activities and ensuring they have access to resources and opportunities in ways that are similar to their non-disabled peers. Disability rights advocates define true inclusion as results-oriented, rather than focused merely on encouragement. To this end, communities, businesses, and other groups and organizations are considered inclusive if people with disabilities do not face barriers to participation and have equal access to opportunities and resources.
Safeguarding is a term used in the United Kingdom, Ireland and Australia to denote measures to protect the health, well-being and human rights of individuals, which allow people—especially children, young people and vulnerable adults—to live free from abuse, harm and neglect.
Carers' rights are rights of unpaid carers or caregivers to public recognition and assistance in preventing and alleviating problems arising from caring for relatives or friends with disabilities. The carers' rights movement draws attention to issues of low income, social exclusion, damage to mental and physical health identified by research into unpaid caregiving. In social policy and campaigning the movement distinguishes such people's situation from that of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work. With an increasingly ageing population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers/caregivers as well.
Intellectual disability (ID), also known as general learning disability in the United Kingdom and formerly mental retardation, is a generalized neurodevelopmental disorder characterized by significantly impaired intellectual and adaptive functioning. It is defined by an IQ under 70, in addition to deficits in two or more adaptive behaviors that affect everyday, general living. Intellectual functions are defined under DSM-V as reasoning, problem‑solving, planning, abstract thinking, judgment, academic learning, and learning from instruction and experience, and practical understanding confirmed by both clinical assessment and standardized tests. Adaptive behavior is defined in terms of conceptual, social, and practical skills involving tasks performed by people in their everyday lives.
Disability abuse is when a person with a disability is abused physically, financially, sexually and/or psychologically due to the person having a disability. This type of abuse has also been considered a hate crime. The abuse is not limited to those who are visibly disabled or physically deformed, but also includes those with learning, intellectual and developmental disabilities or mental illnesses.
The Family Movement, also known in the past as the Parent Movement, is an arm of the disability rights movement, a larger social movement. The Family Movement advocates for the economic and social rights of family members with a disability. Key elements include: social inclusion; active participation; a life of meaning; safety; economic security; accessibility and self-determination. The family movement has been critical in closing institutions and other segregated facilities; promoting inclusive education; reforming adult guardianship to the current supported decisionmaking; increasing access to health care; developing real jobs; fighting stereotypes and reducing discrimination.
Ableism is discrimination and social prejudice against people with physical or mental disabilities. Ableism characterizes people as they are defined by their disabilities and it also classifies disabled people as people who are inferior to non-disabled people. On this basis, people are assigned or denied certain perceived abilities, skills, or character orientations.
Unlicensed assistive personnel (UAP) are paraprofessionals who assist individuals with physical disabilities, mental impairments, and other health care needs with their activities of daily living (ADLs). UAPs also provide bedside care—including basic nursing procedures—all under the supervision of a registered nurse, licensed practical nurse or other health care professional. UAPs must demonstrate their ability and competence before gaining any expanded responsibilities in a clinical setting. While providing this care, UAPs offer compassion and patience and are part of the patient's healthcare support system. Communication between UAPs and registered nurses (RNs) is key as they are working together in their patients' best interests. The scope of care UAPs are responsible for is delegated by RNs or other clinical licensed professionals.
Vocational rehabilitation, also abbreviated VR or voc rehab, is a process which enables persons with functional, psychological, developmental, cognitive, and emotional disabilities, impairments or health disabilities to overcome barriers to accessing, maintaining, or returning to employment or other useful occupations.
Shared Lives, which is also known as Adult Placement in some areas, is a UK form of support and accommodation for adults with need wherein approved individuals or families open their lives to aid older or disabled persons.
Four million people in Australia (18.5%) reported having a disability in 2009, according to the results of the Survey of Disability, Ageing and Carers. Males and females were similarly affected by disability.
Caregiving by country is the regional variation of caregiving practices as distinguished among countries.
Disability in the United Kingdom covers a wide range of conditions and experiences, deeply impacting the lives of millions of people. Defined by the Equality Act 2010 as a physical or mental impairment with a substantial and long-term adverse effect on a person's ability to carry out normal day-to-day activities, it encompasses various aspects of life, including demographics, legislation, healthcare, employment, and culture. Despite numerous advancements in policy and social attitudes, individuals with disabilities often encounter unique challenges and disparities.
Diagnostic overshadowing is the attribution of a person’s symptoms to a psychiatric problem when such symptoms actually suggest a comorbid condition. Diagnostic overshadowing occurs when a healthcare professional assumes that a patient's complaint is due to their disability or coexisting mental health condition rather than fully exploring the cause of the patient's symptoms. Often, once a patient has a confirmed diagnosis, there is a tendency to attribute all new behaviors or symptoms to the original diagnosis. Diagnostic overshadowing increases the risk of further health complications and delay in accurate treatment. An example of diagnostic overshadowing may be a patient being diagnosed with a psychiatric problem and prescribed medication due to head banging behavior, but the patient actually has communication challenges and can't express pain in their mouth due to a dental abscess.
Parents with disabilities are people with certain disorders who are raising young children or being cared for by their young children.
Dementia and Alzheimer's disease in Australia is a major health issue. Alzheimer's disease is the most common type of dementia in Australia. Dementia is an ever-increasing challenge as the population ages and life expectancy increases. As a consequence, there is an expected increase in the number of people with dementia, posing countless challenges to carers and the health and aged care systems. In 2018, an estimated 376,000 people had dementia; this number is expected to increase to 550,000 by 2030 and triple to 900,000 by 2050. The dementia death rate is increasing, resulting in the shift from fourth to second leading cause of death from 2006 to 2015. It is expected to become the leading cause of death over the next number of years. In 2011, it was the fourth leading cause of disease burden and third leading cause of disability burden. This is expected to remain the same until at least 2020.