Caregiving and dementia
Encyclopedia
As populations age
, caregiving and dementia become more common aspects of life. In most mild to medium cases of dementia
the primary care
giver is a family member, usually a spouse or adult child. Over time more and more professional
care in the form of nursing
and other supportive care may be required, whether at home
or in a long term care facility.
A small recent study in the US concluded that patients whose caregivers had a realistic understanding of the prognosis and clinical complications of late dementia were less likely to receive aggressive treatment near the end of life. "
, the direct and indirect costs of caring for an Alzheimer's disease
patient averaged $77,500 per year in the United States
. Caregivers are themselves subject to increased incidence of depression, anxiety, and, in some cases, physical health issues.
study that the most common stressors reported were "disorganization of household routines, difficulties with going away for holidays, restrictions on social life, and the disturbances of sleep..." and that this was common to carers for dementia, stroke
and Parkinson's disease
patients. In a Japan
ese study by Hirono et al. they assessed that "the patients' functional and neuropsychiatric impairments were main patient's factors to increase the caregiver's burden." An Italian
study by Marvardi et al. found "...that patients' behavioral disturbances and disability were the major predictors of the time-dependent burden; the psychophysical burden was explained mainly by caregiver anxiety and depression." A Finnish
study by Leinonen et al. found that "Among the general psychogeriatric patient groups, the caregiving spouses of demented patients with noncognitive psychiatric symptoms are the most burdened group. However, spouses of depressive patients are as much burdened as those of demented patients with mild to moderate memory impairment."
which varies as the dementia impairment progresses in the affected parent or spouse. Feelings of loss and grief are frequent for current Alzheimer's family caregivers, who face anticipatory grief and ambiguous loss.
and day care, finding that the dropout patients' non-coresiding caregivers had "significantly higher values for worry, overload and role captivity, and a higher level of depression" than the caregivers of non-dropout. Gaugler et al. found that "those individuals who utilized in-home help services earlier in their dementia caregiving careers were more likely to delay institutionalization."
Demographics
Demographics are the most recent statistical characteristics of a population. These types of data are used widely in sociology , public policy, and marketing. Commonly examined demographics include gender, race, age, disabilities, mobility, home ownership, employment status, and even location...
, caregiving and dementia become more common aspects of life. In most mild to medium cases of dementia
Dementia
Dementia is a serious loss of cognitive ability in a previously unimpaired person, beyond what might be expected from normal aging...
the primary care
Primary care
Primary care is the term for the health services by providers who act as the principal point of consultation for patients within a health care system...
giver is a family member, usually a spouse or adult child. Over time more and more professional
Professional
A professional is a person who is paid to undertake a specialised set of tasks and to complete them for a fee. The traditional professions were doctors, lawyers, clergymen, and commissioned military officers. Today, the term is applied to estate agents, surveyors , environmental scientists,...
care in the form of nursing
Nursing
Nursing is a healthcare profession focused on the care of individuals, families, and communities so they may attain, maintain, or recover optimal health and quality of life from conception to death....
and other supportive care may be required, whether at home
Home care
Home Care, , is health care or supportive care provided in the patient's home by healthcare professionals Home Care, (also referred to as domiciliary care or social care), is health care or supportive care provided in the patient's home by healthcare professionals Home Care, (also referred to as...
or in a long term care facility.
A small recent study in the US concluded that patients whose caregivers had a realistic understanding of the prognosis and clinical complications of late dementia were less likely to receive aggressive treatment near the end of life. "
Family carers
The role of family caregivers has also become more prominent, as care in the familiar surroundings of home may delay onset of some symptoms and postpone or eliminate the need for more professional and costly levels of care. Home-based care may entail tremendous economic, emotional, and even psychological costs as well. Family caregivers often give up time from work and forego pay in order to spend an average of 47 hours per week with an affected loved one, who frequently cannot be left alone. In a survey of patients with long term care insuranceLong term care insurance
Long-term care insurance , an insurance product sold in the United States, United Kingdom and Canada, helps provide for the cost of long-term care beyond a predetermined period...
, the direct and indirect costs of caring for an Alzheimer's disease
Alzheimer's disease
Alzheimer's disease also known in medical literature as Alzheimer disease is the most common form of dementia. There is no cure for the disease, which worsens as it progresses, and eventually leads to death...
patient averaged $77,500 per year in the United States
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
. Caregivers are themselves subject to increased incidence of depression, anxiety, and, in some cases, physical health issues.
Stressors
Schulz et al. concluded in a US study that "The transition to institutional care is particularly difficult for spouses, almost half of whom visit the patient daily and continue to provide help with physical care during their visits. Clinical interventions that better prepare the caregiver for a placement transition and treat their depression and anxiety following placement may be of great benefit to these individuals." Thommessen et al. found in a NorwegianNorway
Norway , officially the Kingdom of Norway, is a Nordic unitary constitutional monarchy whose territory comprises the western portion of the Scandinavian Peninsula, Jan Mayen, and the Arctic archipelago of Svalbard and Bouvet Island. Norway has a total area of and a population of about 4.9 million...
study that the most common stressors reported were "disorganization of household routines, difficulties with going away for holidays, restrictions on social life, and the disturbances of sleep..." and that this was common to carers for dementia, stroke
Stroke
A stroke, previously known medically as a cerebrovascular accident , is the rapidly developing loss of brain function due to disturbance in the blood supply to the brain. This can be due to ischemia caused by blockage , or a hemorrhage...
and Parkinson's disease
Parkinson's disease
Parkinson's disease is a degenerative disorder of the central nervous system...
patients. In a Japan
Japan
Japan is an island nation in East Asia. Located in the Pacific Ocean, it lies to the east of the Sea of Japan, China, North Korea, South Korea and Russia, stretching from the Sea of Okhotsk in the north to the East China Sea and Taiwan in the south...
ese study by Hirono et al. they assessed that "the patients' functional and neuropsychiatric impairments were main patient's factors to increase the caregiver's burden." An Italian
Italy
Italy , officially the Italian Republic languages]] under the European Charter for Regional or Minority Languages. In each of these, Italy's official name is as follows:;;;;;;;;), is a unitary parliamentary republic in South-Central Europe. To the north it borders France, Switzerland, Austria and...
study by Marvardi et al. found "...that patients' behavioral disturbances and disability were the major predictors of the time-dependent burden; the psychophysical burden was explained mainly by caregiver anxiety and depression." A Finnish
Finland
Finland , officially the Republic of Finland, is a Nordic country situated in the Fennoscandian region of Northern Europe. It is bordered by Sweden in the west, Norway in the north and Russia in the east, while Estonia lies to its south across the Gulf of Finland.Around 5.4 million people reside...
study by Leinonen et al. found that "Among the general psychogeriatric patient groups, the caregiving spouses of demented patients with noncognitive psychiatric symptoms are the most burdened group. However, spouses of depressive patients are as much burdened as those of demented patients with mild to moderate memory impairment."
Anticipatory grief
A caregiver is subject to anticipatory griefAnticipatory grief
Anticipatory grief refers to a grief reaction that occurs before an impending loss. Typically, the impending loss is a death of someone close due to illness but it can also be experienced by dying individuals themselves...
which varies as the dementia impairment progresses in the affected parent or spouse. Feelings of loss and grief are frequent for current Alzheimer's family caregivers, who face anticipatory grief and ambiguous loss.
Respite or day care
A Swedish study examined the effect on caregivers of patients who dropped out of respite careRespite care
Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home....
and day care, finding that the dropout patients' non-coresiding caregivers had "significantly higher values for worry, overload and role captivity, and a higher level of depression" than the caregivers of non-dropout. Gaugler et al. found that "those individuals who utilized in-home help services earlier in their dementia caregiving careers were more likely to delay institutionalization."
See also
- Elderly careElderly careElderly care or simply eldercare is the fulfillment of the special needs and requirements that are unique to senior citizens. This broad term encompasses such services as assisted living, adult day care, long term care, nursing homes, hospice care, and In-Home care.-Cultural and geographic...
- Carers rights movementCarers rights movementThe Carers rights movement attempts to address the issues of low income, social exclusion, damage to mental and physical health and lack of recognition that have been identified by research articles and studies of unpaid carers...
- Alzheimer's diseaseAlzheimer's diseaseAlzheimer's disease also known in medical literature as Alzheimer disease is the most common form of dementia. There is no cure for the disease, which worsens as it progresses, and eventually leads to death...
- The Society for the Arts in Dementia CareThe Society for the Arts in Dementia CareThe Society for the Arts in Dementia Care is a non-profit organization dedicated to knowledge dissemination and education that focuses on improving the quality of lives of seniors living with dementia by using the visual and performing arts.-Background:...
Further reading
- Next Step in Care: free, downloadable resources for family caregivers and health care providers
- Search Google Scholar on "dementia caregiving" OR "dementia caregiver" (announced the Indianapolis Discovery Network for Dementia)
Filmography
- 2011 : Before We ForgetBefore We ForgetBefore We Forget is a 2011 observational documentary film about two women with dementia who live in an Asian society where terminal illnesses and dying remain taboo...
by Jeremy Boo and Lee Xian Jie - 2010 : Blank (L'absence) by Cyril de Gasperis
- 2009 : I Remember Better When I PaintI Remember Better When I PaintI Remember Better When I Paint is a 2009 feature length international documentary film about the positive impact of art and other creative therapies in people with Alzheimer's disease and how these approaches can change the way the disease is viewed by society...
by Eric EllenaEric Ellena-Career:As a director his films include The Last Trackers of the Outback, which won the Public’s Choice Award at the 2008 FIFO - Pacific International Documentary Film Festival of Tahiti and The Long March of Bob Slaughter....
and Berna HuebnerBerna HuebnerBerna G. Huebner is the founder of the Hilgos Foundation in Chicago, Illinois which supports and encourages the ongoing process of artistic creation with people who have different forms of dementia including Alzheimer’s... - 2007 : Away from HerAway From HerAway from Her is a 2006 Canadian film which debuted at the Toronto International Film Festival and also played in the Premier category at the 2007 Sundance Film Festival...
by Sarah PolleySarah PolleySarah Polley is a Canadian actress, singer, film director, and screenwriter. Polley first attained notice in her role as Sara Stanley in the Canadian television series, Road to Avonlea... - 2004 : The NotebookThe NotebookThe Notebook is a 1996 romantic novel by American novelist Nicholas Sparks, based on a true story. The novel was later adapted into a popular romance film by the same name in 2004.-Background:...
by Nick Cassavetes