Management in severe dementia: recommendations of the Scientific Department of Cognitive Neurology and Aging of the Brazilian Academy of Neurology

Brucki, Sonia Maria Dozzi; Aprahamian, Ivan; Borelli, Wyllians Vendramini; Silveira, Victor Calil da; Ferretti, Ceres Eloah de Lucena; Smid, Jerusa; Barbosa, Breno José Alencar Pires; Schilling, Lucas Porcello; Balthazar, Márcio Luiz Figueiredo; Frota, Norberto Anízio Ferreira; Souza, Leonardo Cruz de; Vale, Francisco Assis Carvalho; Caramelli, Paulo; Bertolucci, Paulo Henrique Ferreira; Chaves, Márcia Lorena Fagundes; Nitrini, Ricardo; Schultz, Rodrigo Rizek; Morillo, Lilian Schafirovits

doi:10.1590/1980-5764-DN-2022-S107EN

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Dementia & Neuropsychologia

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Consensus • Dement. neuropsychol. 16 (3 suppl 1) • Sept 2022 • https://doi.org/10.1590/1980-5764-DN-2022-S107EN copy

Management in severe dementia: recommendations of the Scientific Department of Cognitive Neurology and Aging of the Brazilian Academy of Neurology

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Alzheimer’s disease (AD) and other neurodegenerative dementias have a progressive course, impairing cognition, functional capacity, and behavior. Most studies have focused on AD. Severe dementia is associated with increased age, higher morbidity-mortality, and rising costs of care. It is fundamental to recognize that severe dementia is the longest period of progression, with patients living for many years in this stage. It is the most heterogeneous phase in the process, with different abilities and life expectancies. This practice guideline focuses on severe dementia to improve management and care in this stage of dementia. As it is a long period in the continuum of dementia, clinical practice should consider non-pharmacological and pharmacological approaches. Multidisciplinary interventions (physical therapy, speech therapy, nutrition, nursing, and others) are essential, besides educational and support to caregivers.

Keywords:
Dementia; Palliative Care; Behavior; Cognition

Test	Measure	Score	Answered by	Comments
SMMSE	Global cognition	0-30 points	Patient	Good for measuring cognition
CDR		0 none	Caregiver and patient	Good for follow-up
	Global State	0.5 questionable
	Domains: memory, orientation, judgment, problem solving, community affairs, home and hobbies, and personal care	1 mild
		2 moderate
		3 severe
SIB	Global cognition	0-100 points (<63 severe impairment)	Patient	Allows to evaluate very severe patients
ADCS-ADL	ADL	0-54 points	Caregiver	Allows to evaluate severe to very severe patients
ADCS-ADL	19 ADL of moderate to severe dementia	0-54 points	Caregiver	Allows to evaluate severe to very severe patients
FAST	Functionality	1-7	Health professional	Stages 6-7: divided into incapacity progression

BPSD		Suggested dose range*	Side effects
Agitation or aggression	Citalopram**	10-20mg/day, single dose	nausea, diarrhea, headache, increased risk of falls
	Sertraline	50-100mg/day, single dose
	Trazodone***	25-100mg/day, single/partial doses
	Risperidone	0.25-1mg/day, single dose	extrapyramidal side effects, weight gain, metabolic abnormalities, hyperprolactinemia
Psychosis	Risperidone	1-3mg/day, single dose	extrapyramidal side effects, weight gain, metabolic abnormalities, hyperprolactinemia
	Quetiapine	100-200mg/day, single/ partial doses	drowsiness, weight gain, metabolic abnormalities
	Aripiprazole	10-30mg/day, single dose	nausea, weight gain, headache, somnolence, akathisia

In the patient	In the caregiver	In the environment	Recommendations
Pain			Caregivers’ training;
			Health education;
	Lack of knowledge	Poor positioning	Identification and elimination of causal factors in patients and the environment;
	Health education	Excessive noise	Promotion of physical comfort;
	Lack of education in dementia	Abrupt movements	Information to the responsible physician and members of the health team;
			Elimination of excessive noise;
			Gentle patient mobilization.
Urinary infection		Inadequate hygiene	Caregivers’ training;
			Health education;
	Lack of knowledge		Optimization of fractional hydration (1.5-2L/day) or at medical discretion;
	Stress		Double incontinence;
			Hygiene, body, and environmental measures.
Respiratory Infection	Lack of knowledge	Dark, closed or dirty environment	Caregivers’ training;
		Cold temperature	Preventive measures;
			Passive exercises.
Constipation	Lack of knowledge	Adequate bathroom hygiene, security, and privacy	Training in hygiene measures and health education to caregivers;
			Medical and nutritional approach;
			Fractioned hydration.
Refusal of care	Inadequate communication and conducts	Environment adaptation and care	Training of caregivers and health education;
Refusal of care	Inadequate communication and conducts	Environment adaptation and care	Caregivers must be careful with all stimulus and approaches.
Sleep disturbances	Lack of recognition concerning pain, hunger, coldness, heat, mobilization in bed, and previous sleep problems	Observation	Training and health education;
		Change in patients’ behavioral patterns	Adequacy of auditory environmental stimuli;
			Medical evaluation.

Plan demanded by the patient	Medical record	Plan of care	Level of care
I want my life to be preserved using all measures of care available, when indicated	Full intensive care	ICU admission, including orotracheal intubation and CPR	Critical care:
I want my life to be preserved, except when my heart stops. I accept ICU admission and all measures, including intubation, except CPR if my heart stops.	Intensive care without CPR	ICU admission. Excluding: Defibrillation and CPR	- Attempt to support life with artificial measures in ICUs.
I want my life to be preserved, except when my heart stops. I accept ICU admission and all measures, except CPR if my heart stops or in case of intubation.	Intensive care without orotracheal intubation or CPR	ICU admission Non-invasive ventilation and high-flow O2 Excluding: Intubation, defibrillation, and CPR	- These orders in general are not used in case of natural end-of-life outcomes.
I want to be treated for reversible causes but without measures of artificial life support. If I show an irreversible condition, I want to receive the treatment available, except for invasive procedures (intubation or CPR). I want to receive this care in this ward.	Advanced ward care	Ward care, including treatment for reversible causes. Excluding: ICU admission, intubation or CPR	Ward care:
I understand death as a natural, expected event. I accept receiving care to decrease pain or other symptoms. I would like to receive this set of care whenever available.	Basic ward care	Exclusive symptoms management and comfort measures	- Support artificial measures will not be initiated if patients’ heart or breathing stops (i.e., intubation or CPR)

Medical indication	Patient preference
benefits X harms/favoring patients	principle of autonomy/honor and respect the patients’ wishes
It refers to the practice of doing good and benefiting others against acts which may be harmful, helping health professionals choose available treatments and examining how each alternative raises the possibility of success and favors patients.	It applies the ethical principle of autonomy and examines patients’ previously expressed or assumed beliefs and preferences. It aims to honor and respect patients’ wishes as much as possible within acceptable limits. In severe dementia, it would be supported by an advance directive, with the need for a SDM as a family member or friend to help with decision-making. In the absence of advanced directives, it is essential to request the presence of an SDM. This enables caregivers to determine how patients would like to be cared for if they were able to decide, whatever it may be. It would involve their morals, hopes, aspirations, values, principles, and spirituality. Therefore, sensitivity of those responsible is paramount, which is practically the current rule in Brazil.
Quality of life	Contextual features
Dignity/safety and comfort	socio-economic factors/political and religious preferences
The various treatments available should provide a better quality of life (QOL). Dimensioning QOL is complex and unique for everyone, even with the help of family members’ judgment, care must be taken not to prolong life with suffering. Dignity, safety, and comfort must prevail.	This last quadrant refers to the exacerbation of ethical dilemmas due to socio-economic, political, cultural, and religious factors that frequently appear in advanced dementia and are reflected in care and decision-making.

Academia Brasileira de Neurologia, Departamento de Neurologia Cognitiva e Envelhecimento R. Vergueiro, 1353 sl.1404 - Ed. Top Towers Offices, Torre Norte, São Paulo, SP, Brazil, CEP 04101-000, Tel.: +55 11 5084-9463 | +55 11 5083-3876 - São Paulo - SP - Brazil
E-mail: revistadementia@abneuro.org.br | demneuropsy@uol.com.br

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[1] Correspondence: Sonia Brucki; Email: sonia.brucki@gmail.com.

1	No difficulty either subjectively or objectively.
2	Complains of forgetting location of objects. Subjective work difficulties.
3	Decreased job functioning evident to co-workers. Difficulty in traveling to new locations. Decreased organizational capacity.
4	Decreased ability to perform complex tasks, e.g., planning dinner for guests, handling personal finances (such as forgetting to pay bills), difficulty shopping, etc.
5	Requires assistance in choosing proper clothing.
6a	Improperly puts on clothes without assistance.
6b	Unable to properly bathe (shower) (e.g., difficulty adjusting bathwater (shower) temperature.
6c	Inability to handle toileting mechanics.
6d	Urinary incontinence.
6e	Fecal incontinence.
7a	Ability to speak limited to approximately a half a dozen intelligible different words or fewer in the course of an average day or in the course of an intensive interview.
7b	Speech ability limited to the use of a single intelligible word in an average day or in the course of an interview.
7c	Loss of ambulatory ability (unable to walk without personal assistance).
7d	Unable to sit up without assistance.
7e	Loss of ability to smile.
7f	Loss of ability to independently hold up their head.