Family and the care of older adults with Alzheimer disease: a scoping review

Silva, Pedro Victor de Carvalho; Silva, Caléo Moisés Pinto da; Silveira, Edilene Aparecida Araujo da

doi:10.1590/2177-9465-EAN-2022-0313en

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REVIEW • Esc. Anna. Nery 27 • 2023 • https://doi.org/10.1590/2177-9465-EAN-2022-0313en copy

Family and the care of older adults with Alzheimer disease: a scoping review

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Objective

to identify scientific evidence, in the context of the home, available on family care to elderly people with Alzheimer’s disease.

Method

this is a scoping review according to JBI^®, through a search strategy in the PubMed, Embase, Cochrane, CINAHL, Web of Science, LILACS and BDENF databases. The analysis of the identified material was performed by three independent reviewers. The extracted data were analyzed and synthesized in a narrative way.

Results

of the 1,546 studies found, 17 were kept for review and their content was summarized and divided into ten types of care: 1) Protection and supervision; 2) Hygiene and comfort; 3) Food and hydration; 4) Social and leisure; 5) Oral hygiene; 6) Drug treatment; 7) Communication; 8) Independence; 9) Cognitive exercises; and 10) Pressure injury prevention.

Conclusion and implications for practice

there is a lack of studies on the actions carried out by family caregivers and, especially, research on interventions. Care is performed empirically and without professional guidance. It is necessary to invest in research and training for family caregivers.

Keywords:
Family; Caregivers; Housing; Alzheimer Disease; Aged

Database	Search
PubMed	(("Alzheimer Disease"[Mesh]) OR ("Alzheimer Disease"[Title/Abstract] OR "Alzheimer Dementia"[Title/Abstract] OR "Alzheimer Dementias"[Title/Abstract] OR "Alzheimer Diseases"[Title/Abstract] OR "Alzheimer Syndrome"[Title/Abstract] OR "Alzheimer Type Dementia"[Title/Abstract] OR "Alzheimer Type Dementia"[Title/Abstract] OR "Alzheimer Type Senile Dementia"[Title/Abstract] OR "Alzheimer’s Disease"[Title/Abstract] OR "Alzheimer’s Diseases"[Title/Abstract] OR "Alzheimer-Type Dementia"[Title/Abstract] OR "Alzheimers Diseases"[Title/Abstract] OR "Early Onset Alzheimer Disease"[Title/Abstract] OR "Familial Alzheimer Disease"[Title/Abstract] OR "Familial Alzheimer Diseases"[Title/Abstract] OR "Late Onset Alzheimer Disease"[Title/Abstract] OR "Presenile Alzheimer Dementia"[Title/Abstract] OR "Presenile Dementia"[Title/Abstract])) AND ((((((("Home Nursing"[Mesh]) OR ("Home Nursing"[Title/Abstract] OR "Nonprofessional Home Care"[Title/Abstract] OR "Non-Professional Home Care"[Title/Abstract])) OR ("Health Services for the Aged"[Mesh])) OR ("Geriatric Health Services"[Title/Abstract] OR "Health Services for the Elderly"[Title/Abstract] OR "Geriatric Health Service"[Title/Abstract] OR "Health Services for Aged"[Title/Abstract])) OR ("Health Knowledge, Attitudes, Practice"[Mesh])) OR ("Health Knowledge, Attitudes, Practice"[Title/Abstract])) OR ("Home Health"[Title/Abstract] OR "Home care"[Title/Abstract] OR "Patient Care"[Title/Abstract]))
Cochrane	("Doença de Alzheimer" OR "Alzheimer de Início Tardio" OR "Alzheimer Precoce" OR "Alzheimer Tardio" OR "Demência de Alzheimer" OR "Demência Pré-Senil" OR "Demência Pré-Senil Tipo Alzheimer" OR "Demência Senil" OR "Demência Senil com Estado Confusional Agudo" OR "Demência Senil Tipo Alzheimer" OR "Demência Tipo Alzheimer" OR "Doença de Alzheimer de Início Focal" OR "Doença de Alzheimer de Início Precoce" OR "Doença de Alzheimer de Início Tardio" OR "Doença de Alzheimer Familiar" OR "Doenças de Alzheimer" OR "Mal de Alzheimer" OR "Alzheimer Disease" OR "Acute Confusional Senile Dementia" OR "Alzheimer Dementia" OR "Alzheimer Dementias" OR "Alzheimer Diseases" OR "Alzheimer Sclerosis" OR "Alzheimer Syndrome" OR "Alzheimer Type Dementia" OR "Alzheimer Type Dementia" OR "Alzheimer Type Senile Dementia" OR "Alzheimer’s Disease" OR "Alzheimer’s Diseases" OR "Alzheimer-Type Dementia" OR "Alzheimers Diseases" OR "Early Onset Alzheimer Disease" OR "Familial Alzheimer Disease" OR "Familial Alzheimer Diseases" OR "Focal Onset Alzheimer’s Disease" OR "Late Onset Alzheimer Disease" OR "Presenile Alzheimer Dementia" OR "Presenile Dementia" OR "Primary Senile Degenerative Dementia" OR "Enfermedad de Alzheimer" OR "Demencia de Alzheimer" OR "Demencia Presenil de Alzheimer" OR "Demencia Senil" OR "Demencia Senil Aguda Confusa" OR "Demencia Senil Tipo Alzheimer" OR "Demencia Tipo Alzheimer" OR "Enfermedades de Alzheimer" OR "Mal de Alzheimer") AND (Cuidadores OR "Cônjuges Cuidadores" OR Cuidador OR "Cuidador de Família" OR "Cuidador Familiar" OR "Cuidadores Cônjuges" OR "Cuidadores de Família" OR "Cuidadores Familiares" OR "Familiar Cuidador" OR "Familiares Cuidadores" OR "Family Caregiver" OR "Family Caregivers" OR "Spouse Caregiver" OR "Spouse Caregivers" OR "Cuidador de Familia" OR "Cuidador Familiar" OR "Cuidadores de Esposos" OR "Cuidadores de Familia" OR "Cuidadores Familiares" OR "Familiar Cuidador" OR "Familiares Cuidadores") AND ("Assistência Domiciliar" OR "Assistência Domiciliar aos Idosos" OR "Assistência Domiciliar por não Profissionais de Saúde" OR "Assistência Domiciliária" OR "Cuidados Domiciliares de Saúde" OR "Home Nursing" OR "Non-Professional Home Care" OR "Nonprofessional Home Care" OR "Atención Domiciliaria de Salud" OR "Asistencia Domiciliaria de Salud" OR "Atención no Profesional en Domicilio" OR "Cuidados Domiciliarios de Salud" OR "Informal care" OR "Informal cares" OR "Atención al Paciente" OR "Saúde do Idoso" OR "Saúde da Pessoa Idosa" OR "Saúde da Terceira Idade" OR "Health of the Elderly" OR "Aging Health" OR "Elderly Health" OR "Health of Aged Persons" OR "Health of Elders" OR "Health of the Aged" OR "Salud del Anciano" OR "Salud de la Persona Anciana" OR "Salud de la Persona Mayor" OR "Salud de la Tercera Edad" OR "Home Health" OR "Saúde domiciliar" OR "Home care" OR "Cuidados domiciliares" OR "Conhecimentos, Atitudes e Prática em Saúde" OR "Atitudes e Prática em Saúde" OR "Atitudes e Práticas em Saúde" OR "Conhecimentos, Atitudes e Práticas em Saúde" OR "Health Knowledge, Attitudes, Practice" OR "Knowledge, Attitudes, Practice" OR "Conocimientos, Actitudes y Práctica en Salud" OR "Conocimientos, Actitudes y Práctica Sanitarias" OR "Conocimientos, Actitudes y Prácticas en Salud")
Web of Science, EMBASE	("Doença de Alzheimer" OR "Doenças de Alzheimer" OR "Mal de Alzheimer" OR "Alzheimer Disease" OR "Alzheimer-Type Dementia" OR "Demencia Tipo Alzheimer" OR "Enfermedades de Alzheimer" OR "Mal de Alzheimer") AND (Cuidadores OR "Cônjuges Cuidadores" OR Cuidador OR "Cuidador de Família" OR "Cuidador Familiar" OR "Cuidadores Cônjuges" OR "Cuidadores de Família" OR "Cuidadores Familiares" OR "Familiar Cuidador" OR "Familiares Cuidadores" OR "Family Caregiver" OR "Family Caregivers" OR "Cuidador de Familia" OR "Cuidador Familiar" OR "Cuidadores de Esposos" OR "Cuidadores de Familia" OR "Cuidadores Familiares" OR "Familiar Cuidador" OR "Familiares Cuidadores") AND ("Assistência Domiciliar" OR "Assistência Domiciliar aos Idosos" OR "Assistência Domiciliar por não Profissionais de Saúde" OR "Assistência Domiciliária" OR "Cuidados Domiciliares de Saúde" OR "Home Nursing" OR "Non-Professional Home Care" OR "Nonprofessional Home Care" OR "Atención Domiciliaria de Salud" OR "Asistencia Domiciliaria de Salud" OR "Atención no Profesional en Domicilio" OR "Cuidados Domiciliarios de Salud" OR "Informal care" OR "Informal cares" OR "Atención al Paciente" OR "Saúde do Idoso" OR "Saúde da Pessoa Idosa" OR "Saúde da Terceira Idade" OR "Health of the Elderly" OR "Aging Health" OR "Elderly Health" OR "Health of Aged Persons" OR "Health of Elders" OR "Health of the Aged" OR "Salud del Anciano" OR "Salud de la Persona Anciana" OR "Salud de la Persona Mayor" OR "Salud de la Tercera Edad" OR "Home Health" OR "Saúde domiciliar" OR "Home care" OR "Cuidados domiciliares" OR "Conhecimentos, Atitudes e Prática em Saúde" OR "Atitudes e Prática em Saúde" OR "Atitudes e Práticas em Saúde" OR "Conhecimentos, Atitudes e Práticas em Saúde" OR "Health Knowledge, Attitudes, Practice" OR "Knowledge, Attitudes, Practice" OR "Conocimientos, Actitudes y Práctica en Salud" OR "Conocimientos, Actitudes y Práctica Sanitarias" OR "Conocimientos, Actitudes y Prácticas en Salud")
CINAHL	("Doença de Alzheimer" OR "Alzheimer de Início Tardio" OR "Alzheimer Precoce" OR "Alzheimer Tardio" OR "Demência de Alzheimer" OR "Demência Pré-Senil" OR "Demência Pré-Senil Tipo Alzheimer" OR "Demência Senil" OR "Demência Senil com Estado Confusional Agudo" OR "Demência Senil Tipo Alzheimer" OR "Demência Tipo Alzheimer" OR "Doença de Alzheimer de Início Focal" OR "Doença de Alzheimer de Início Precoce" OR "Doença de Alzheimer de Início Tardio" OR "Doença de Alzheimer Familiar" OR "Doenças de Alzheimer" OR "Mal de Alzheimer" OR "Alzheimer Disease" OR "Acute Confusional Senile Dementia" OR "Alzheimer Dementia" OR "Alzheimer Dementias" OR "Alzheimer Diseases" OR "Alzheimer Sclerosis" OR "Alzheimer Syndrome" OR "Alzheimer Type Dementia" OR "Alzheimer Type Dementia" OR "Alzheimer Type Senile Dementia" OR "Alzheimer’s Disease" OR "Alzheimer’s Diseases" OR "Alzheimer-Type Dementia" OR "Alzheimers Diseases" OR "Early Onset Alzheimer Disease" OR "Familial Alzheimer Disease" OR "Familial Alzheimer Diseases" OR "Focal Onset Alzheimer’s Disease" OR "Late Onset Alzheimer Disease" OR "Presenile Alzheimer Dementia" OR "Presenile Dementia" OR "Primary Senile Degenerative Dementia" OR "Enfermedad de Alzheimer" OR "Demencia de Alzheimer" OR "Demencia Presenil de Alzheimer" OR "Demencia Senil" OR "Demencia Senil Aguda Confusa" OR "Demencia Senil Tipo Alzheimer" OR "Demencia Tipo Alzheimer" OR "Enfermedades de Alzheimer" OR "Mal de Alzheimer") AND (Cuidadores OR "Cônjuges Cuidadores" OR Cuidador OR "Cuidador de Família" OR "Cuidador Familiar" OR "Cuidadores Cônjuges" OR "Cuidadores de Família" OR "Cuidadores Familiares" OR "Familiar Cuidador" OR "Familiares Cuidadores" OR "Family Caregiver" OR "Family Caregivers" OR "Spouse Caregiver" OR "Spouse Caregivers" OR "Cuidador de Familia" OR "Cuidador Familiar" OR "Cuidadores de Esposos" OR "Cuidadores de Familia" OR "Cuidadores Familiares" OR "Familiar Cuidador" OR "Familiares Cuidadores") AND ("Assistência Domiciliar" OR "Assistência Domiciliar aos Idosos" OR "Assistência Domiciliar por não Profissionais de Saúde" OR "Assistência Domiciliária" OR "Cuidados Domiciliares de Saúde" OR "Home Nursing" OR "Non-Professional Home Care" OR "Nonprofessional Home Care" OR "Atención Domiciliaria de Salud" OR "Asistencia Domiciliaria de Salud" OR "Atención no Profesional en Domicilio" OR "Cuidados Domiciliarios de Salud" OR "Informal care" OR "Informal cares" OR "Atención al Paciente" OR "Saúde do Idoso" OR "Saúde da Pessoa Idosa" OR "Saúde da Terceira Idade" OR "Health of the Elderly" OR "Aging Health" OR "Elderly Health" OR "Health of Aged Persons" OR "Health of Elders" OR "Health of the Aged" OR "Salud del Anciano" OR "Salud de la Persona Anciana" OR "Salud de la Persona Mayor" OR "Salud de la Tercera Edad" OR "Home Health" OR "Saúde domiciliar" OR "Home care" OR "Cuidados domiciliares" OR "Conhecimentos, Atitudes e Prática em Saúde" OR "Atitudes e Prática em Saúde" OR "Atitudes e Práticas em Saúde" OR "Conhecimentos, Atitudes e Práticas em Saúde" OR "Health Knowledge, Attitudes, Practice" OR "Knowledge, Attitudes, Practice" OR "Conocimientos, Actitudes y Práctica en Salud" OR "Conocimientos, Actitudes y Práctica Sanitarias" OR "Conocimientos, Actitudes y Prácticas en Salud")
LILACS, BDENF	("Doença de Alzheimer" OR "Alzheimer de Início Tardio" OR "Alzheimer Precoce" OR "Alzheimer Tardio" OR "Demência de Alzheimer" OR "Demência Pré-Senil" OR "Demência Pré-Senil Tipo Alzheimer" OR "Demência Senil" OR "Demência Senil com Estado Confusional Agudo" OR "Demência Senil Tipo Alzheimer" OR "Demência Tipo Alzheimer" OR "Doença de Alzheimer de Início Focal" OR "Doença de Alzheimer de Início Precoce" OR "Doença de Alzheimer de Início Tardio" OR "Doença de Alzheimer Familiar" OR "Doenças de Alzheimer" OR "Mal de Alzheimer" OR "Alzheimer Disease" OR "Acute Confusional Senile Dementia" OR "Alzheimer Dementia" OR "Alzheimer Dementias" OR "Alzheimer Diseases" OR "Alzheimer Sclerosis" OR "Alzheimer Syndrome" OR "Alzheimer Type Dementia" OR "Alzheimer Type Dementia" OR "Alzheimer Type Senile Dementia" OR "Alzheimer’s Disease" OR "Alzheimer’s Diseases" OR "Alzheimer-Type Dementia" OR "Alzheimers Diseases" OR "Early Onset Alzheimer Disease" OR "Familial Alzheimer Disease" OR "Familial Alzheimer Diseases" OR "Focal Onset Alzheimer’s Disease" OR "Late Onset Alzheimer Disease" OR "Presenile Alzheimer Dementia" OR "Presenile Dementia" OR "Primary Senile Degenerative Dementia" OR "Enfermedad de Alzheimer" OR "Demencia de Alzheimer" OR "Demencia Presenil de Alzheimer" OR "Demencia Senil" OR "Demencia Senil Aguda Confusa" OR "Demencia Senil Tipo Alzheimer" OR "Demencia Tipo Alzheimer" OR "Enfermedades de Alzheimer" OR "Mal de Alzheimer") AND (cuidadores OR "Cônjuges Cuidadores" OR cuidador OR "Cuidador de Família" OR "Cuidador Familiar" OR "Cuidadores Cônjuges" OR "Cuidadores de Família" OR "Cuidadores Familiares" OR "Familiar Cuidador" OR "Familiares Cuidadores" OR "Outro Apoiador" OR caregivers OR "Care Giver" OR "Care Givers" OR caregiver OR carer OR carers OR "Family Caregiver" OR "Family Caregivers" OR "Spouse Caregiver" OR "Spouse Caregivers" OR "Cuidador de Familia" OR "Cuidador Familiar" OR "Cuidadores de Esposos" OR "Cuidadores de Familia" OR "Cuidadores Familiares" OR "Familiar Cuidador" OR "Familiares Cuidadores") AND ("Assistência Domiciliar" OR "Assistência Domiciliar aos Idosos" OR "Assistência Domiciliar por não Profissionais de Saúde" OR "Assistência Domiciliária" OR "Cuidados Domiciliares de Saúde" OR "Home Nursing" OR "Non-Professional Home Care" OR "Nonprofessional Home Care" OR "Atención Domiciliaria de Salud" OR "Asistencia Domiciliaria de Salud" OR "Atención no Profesional en Domicilio" OR "Cuidados Domiciliarios de Salud" OR "Assistência ao Paciente" OR "Assistência Prestada ao Paciente" OR "Cuidados Prestados ao Paciente" OR "Patient Care" OR "Informal care" OR "Informal cares" OR "Atención al Paciente" OR "Administração dos Cuidados ao Paciente" OR "Patient Care Management" OR "Manejo de Atención al Paciente" OR "Saúde do Idoso" OR "Caderneta de Saúde da Pessoa Idosa" OR "Caderneta de Saúde do Idoso" OR "Saúde da Pessoa Idosa" OR "Saúde da Terceira Idade" OR "Health of the Elderly" OR "Aging Health" OR "Elderly Health" OR "Health of Aged Persons" OR "Health of Elders" OR "Health of the Aged" OR "Salud del Anciano" OR "Salud de la Persona Anciana" OR "Salud de la Persona Mayor" OR "Salud de la Tercera Edad" OR "Home Health" OR "Saúde domiciliar" OR "Home care" OR "Cuidados domiciliares" OR "Conhecimentos, Atitudes e Prática em Saúde" OR "Atitudes e Prática em Saúde" OR "Atitudes e Práticas em Saúde" OR "Conhecimentos, Atitudes e Práticas em Saúde" OR "Health Knowledge, Attitudes, Practice" OR "Knowledge, Attitudes, Practice" OR "Conocimientos, Actitudes y Práctica en Salud" OR "Conocimientos, Actitudes y Práctica Sanitarias" OR "Conocimientos, Actitudes y Prácticas en Salud") AND ( db:("LILACS" OR "IBECS" OR "BDENF" OR "CUMED" OR "LIS" OR "INDEXPSI" OR "WHOLIS" OR "BINACIS" OR "colecionaSUS"))

Title, author	Year, journal and country	Family care
Management Decisions Made by Caregiver Spouses of Persons With Alzheimer’s Disease	The American Journal of Occupational Therapy, 1994, USA	The study describes the activities carried out by 26 caregivers’ wives in five categories of work, describing the types of care according to the purpose. They are defined as anticipatory, preventive, supervisory, instrumental and protective care.
Corcoran MA.¹³13 Corcoran MA. Management decisions made by caregiver. Am J Occup Ther. 1994;48(1):38-45. http://dx.doi.org/10.5014/ajot.48.1.38. PMid:8116782. http://dx.doi.org/10.5014/ajot.48.1.38...	The American Journal of Occupational Therapy, 1994, USA
Communicating With Persons With Alzheimer’s Disease: Experiences of Family and Formal Caregivers	Archives of psychiatric nursing, 1995, USA	The study addressed strategies carried out by 23 family caregivers (spouses and children) to deal with behavioral problems of older adults with Alzheimer’s, such as fear, agitation, wandering and difficulty communicating. Two themes emerged as care strategies: environmental adjustments and comfort.
Richter JM, Roberto KA, Bottenberg DJ.¹⁴14 Richter JM, Roberto KA, Bottenberg DJ. Communicating with persons with Alzheimer’s disease: experiences of family and formal caregivers. Arch Psychiatr Nurs. 1995;9(5):279-85. http://dx.doi.org/10.1016/S0883-9417(95)80047-6. PMid:7487169. http://dx.doi.org/10.1016/S0883-9417(95)...	Archives of psychiatric nursing, 1995, USA
The experience of caring for a family member with Alzheimer’s disease	Western journal of nursing research, 2001, USA	Study carried out with 103 family caregivers. Caregivers are fully immersed in care, respecting older adults’ dignity and trying to keep their daily lives as normal as possible. Caregivers is concerned with safety, avoiding dangerous situations in the domestic environment and with older adults’ autonomy, thus allowing them to continue performing some domestic tasks that they still manage, respecting their limitations.
Butcher HK, Holkup PA, Buckwalter KC.¹⁵15 Butcher HK, Holkup PA, Buckwalter KC. The experience of caring for a family member with Alzheimer’s disease. West J Nurs Res. 2001;23(1):33-55. http://dx.doi.org/10.1177/019394590102300104. PMid:11216023. http://dx.doi.org/10.1177/01939459010230...	Western journal of nursing research, 2001, USA
Dinâmica familiar, as fases do idoso com alzheimer e os estágios vivenciados pela família na relação do cuidado no espaço domiciliar	Revista Brasileira de Enfermagem, 2004, Brazil	The study addresses the care provided by eight family caregivers and the family modification resulting from caring for an older adult with Alzheimer’s at home according to the evolution of the disease. Maintaining family care during the course of the illness depends on how well the family is able to implement effective strategies in caring for older adults with dementia. The study selects care according to the evolution of the disease, which is divided into three phases: initial, intermediate and advanced.
Coelho GS, Alvil NAT.¹⁶16 Coelho GS, Alvim NAT. A dinâmica familiar, as fases do idoso com alzheimer e os estágios vivenciados pela família na relação do cuidado no espaço domiciliar. Rev Bras Enferm. 2004;57(5):541-4. http://dx.doi.org/10.1590/S0034-71672004000500005. PMid:15997795. http://dx.doi.org/10.1590/S0034-71672004...	Revista Brasileira de Enfermagem, 2004, Brazil
Atenção ao familiar cuidador do idoso com doença de Alzheimer	Acta sci, 2004, Brazil	The activities carried out by the four caregivers (a wife and three children) are described as continuous and uninterrupted care and characterized by hygiene care, care with food and elimination, emotional support, care with transporting older adults, financial administration, environment maintenance, environmental modifications and control of drug treatment accompanying older adults in appointments and supplying the drugs at the correct times.
Luzardo A, Waldman BF.¹⁷17 Luzardo AR, Waldman BF. Atenção ao familiar cuidador do idoso com doença de Alzheimer. Acta Sci Heal Sci. 2004;26(1):135-45. http://dx.doi.org/10.4025/actascihealthsci.v26i1.1640. http://dx.doi.org/10.4025/actascihealths...	Acta sci, 2004, Brazil
Female Alzheimer’s Patient Caregivers Share Their Strength	Holistic Nursing Practice, 2004, USA	The article brings the concern of 14 family caregivers to maintain older adults’ social and religious side through efforts to preserve customs, for instance, participating in masses, social events and leisure activities.
Pauan O.¹⁸18 Paun O. Female Alzheimer’ s Patient Caregivers. Holist Nurs Pract. 2004;18(1):11-7. http://dx.doi.org/10.1097/00004650-200401000-00003. PMid:14765687. http://dx.doi.org/10.1097/00004650-20040...	Holistic Nursing Practice, 2004, USA
La artesanía del cuidado: cuidar en la casa a un familiar con demencia avanzada	Enfermagem Clínica, 2005, Spain	The author identifies strategies that 18 family caregivers and two professionals create to help older adults in the home environment, such as using “tricks” and non-verbal communication. In addition, they also adapt the environment and create “work tools” that facilitate care.
Cuesta-Benjumea C.¹⁹19 Cuesta-Benjumea C. La artesanía del cuidado: cuidar en la casa a un familiar con demencia avanzada. Enferm Clin. 2005;15(6):335-42. http://dx.doi.org/10.1016/S1130-8621(05)71140-2. http://dx.doi.org/10.1016/S1130-8621(05)...	Enfermagem Clínica, 2005, Spain
Caregiver Perspectives on Safety in Home Dementia Care	Western journal of nursing research, 2007, USA	Caregivers report a lot of concern about older adults’ safety, mainly due to the risk of falling and being lost if they leave the house. In general, the author identified four approaches taken by caregivers to help older adults: environment supervision, modification, encouragement of social and recreational activities, and moving to older adults’ residence.
Lach HW Chang YP.²⁰20 Lach HW, Chang YP. Perspectivas do cuidador sobre segurança no atendimento domiciliar à demência. West J Nurs Res. 2007;29(8):993-1014. http://dx.doi.org/10.1177/0193945907303098. PMid:17630389. http://dx.doi.org/10.1177/01939459073030...	Western journal of nursing research, 2007, USA
O cuidador e os cuidados ao portador de doença de Alzheimer: contribuições à enfermagem	Revista Mineira de Enfermagem, 2008, Brazil	Study carried out with eight family caregivers. The authors found several activities carried out by caregivers in the home environment, such as body hygiene, oral hygiene, food and hydration, help with basic activities such as dressing and combing hair, constant supervision and concern for maintaining communication.
Fonseca AM, Soares E.²¹21 Fonseca AM, Soares E. O cuidador e os cuidados ao portador de doença de alzheimer: contribuições à enfermagem. Rev Min Enferm. [Internet]. 2008; [citado 2022 mar 4];12(4):501-7. Disponível em: https://pesquisa.bvsalud.org/portal/resource/pt/bde-17883 https://pesquisa.bvsalud.org/portal/reso...	Revista Mineira de Enfermagem, 2008, Brazil
The demands of family caregivers of elderly individuals with dementia	Revista da Escola de Enfermagem da USP, 2010, Brazil	The study had the participation of 104 family caregivers and demonstrated that they help older adults in practically all activities of daily living (ADLs), and those that were assessed were body hygiene, oral hygiene, bowel movements, skin care, food, medication, sleep/rest, physical activity, leisure and return appointments.
Gratao ACM, Vale FAC, Roriz-Cruz et al.²²22 Gratao ACM, Vale FAC, Roriz-Cruz M, Haas VJ, Lange C, Talmelli LFS et al. The demands of family caregivers of elderly individuals with dementia. Rev Esc Enferm USP. 2010;44(4):873-80. http://dx.doi.org/10.1590/S0080-62342010000400003. PMid:21329110. http://dx.doi.org/10.1590/S0080-62342010...	Revista da Escola de Enfermagem da USP, 2010, Brazil
O idoso portador da doença de alzheimer: o cuidado e o conhecimento do cuidador familiar	Revista Mineira de Enfermagem, 2010, Brazil	The study included the participation of 14 family caregivers. Most care is related to concern for physical integrity, protection and constant observation, but it also extends to basic care such as body hygiene. There is also a report of concern with maintaining, at the very least, cognitive capacity through simple memory exercises, such as spelling words and doing math.
Lenardt MH, Silva SC, Willig MH, Seima MD²³23 Lenardt MH, Silva SC, Willig MH, Seima MD. O idoso portador da doença de Alzheimer: o cuidado e o conhecimento do cuidador familiar. Rev Min Enferm. [Internet]. 2010; [citado 2022 mar 4]; 14(3):301-7. Disponível em: https://pesquisa.bvsalud.org/portal/resource/pt/bde-19549 https://pesquisa.bvsalud.org/portal/reso...	Revista Mineira de Enfermagem, 2010, Brazil
Cuidar de idosos com doença de alzheimer: um enfoque na teoria do cuidado cultural	Revista RENE, 2012, Brazil	In this study, the authors report care for older adults with a ritual of constant activities, which are repeated daily, during the day and at night, due to older adults’ dependence. Daily activities are usually based on helping with bathing, changing diapers, putting on clothes, providing meals, administering medications at the correct times, and mentioning watching television as a leisure activity. A total of 20 family caregivers participated in the study.
Ramos JLC, Menezes MR.²⁴24 Ramos JLC, Menezes MR. Cuidar de idosos com doença de Alzheimer: um enfoque na teoria do cuidado cultural. Rev Rene. [Internet]. 2012; [citado 2022 mar 4]; 13(4):805-15. Disponível em: http://www.periodicos.ufc.br/rene/article/view/4037 http://www.periodicos.ufc.br/rene/articl...	Revista RENE, 2012, Brazil
A perspectiva do cuidador frente ao idoso com a doença de Alzheimer	Rev. Pesquisa, 2013, Brazil	The study brings, through the speeches of the ten family caregivers, the constant concern and care they provide in relation to older adults’ physical integrity, focusing mainly on falls. Therefore, they organize the home environment and always accompany older adults, even inside the home. Vigil is always constant and they try to keep older adults away from dangerous places and objects. Caregivers also have a routine of daily activities, which consists of helping with bathing, taking care of hair, brushing teeth, performing oral hygiene, dressing, feeding and hydration, changing chairs, taking to the bathroom, offering medications on time correct and take for walks. In cases where older adults are bedridden, caregivers are concerned with skin hydration and the acquisition of suitable mattresses to avoid injuries.
Silva SPN, Aquino CAG, Barbosa TLA, Silva CSO, Xavier-Gomes LM.²⁵25 Silva SPN, Aquino CAG, Barbosa TLA, Silva CSO, Xavier-Gomes LM. The perspective of caregiver front to the elderly people with Alzheimer Disease. Rev Pesqui Cuid Fundam Online. 2013:5(1):3333-42. http://dx.doi.org/10.9789/2175-5361.2013.v5i1.3333-3342. http://dx.doi.org/10.9789/2175-5361.2013...	Rev. Pesquisa, 2013, Brazil
Estratégias de cuidado bucal para idosos com Doença de Alzheimer no domicílio	Revista brasileira de Geriatria Gerontologia, 2016, Brazil	The study brings oral health care performed at home by 30 caregivers, 26 family members, 1 friend and 3 professionals. The author identified the necessary care according to the dependency of older adults, showing the difference in care according to the evolution of the disease.
Warmling AMF Santos SMA, Mello ALSF.²⁶26 Warmling AMF, Santos SMA, Mello ALSF. Estratégias de cuidado bucal para idosos com Doença de Alzheimer no domicílio. Rev Bras Geriatr Gerontol. 2016;19(5):851-60. http://dx.doi.org/10.1590/1809-98232016019.160026. http://dx.doi.org/10.1590/1809-982320160...
Dementia and patient safety in the community: a qualitative study of family carers’ protective practices and implications for services	BMC health services research, 2019, Norway	The 23 family caregivers participating in the study act to prevent physical harm through preventive presence, keeping company with older adults routinely or constantly to prevent falls or accidents at home. They help older adults to deal with their finances, helping with trips to banks or with electronic devices and controlling unnecessary expenses. Family caregivers also sought to prevent negative emotions for the person with dementia by providing leisure activities.
Häikiö K, Sagbakken M, Rugkåsa J.²⁷27 Häikiö K, Sagbakken M, Rugkåsa J. Dementia and patient safety in the community: a qualitative study of family carers’ protective practices and implications for services. BMC Health Serv Res. 2019;19(1):635. http://dx.doi.org/10.1186/s12913-019-4478-2. PMid:31488131. http://dx.doi.org/10.1186/s12913-019-447...	BMC health services research, 2019, Norway

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[1] Corresponding author: Edilene Aparecida Araujo da Silveira. E-mail: edileneap@ufsj.edu.br