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Journal of Alzheimer’s Disease 85 (2022) 55–58 55

DOI 10.3233/JAD-215234
IOS Press

Short Communication

When My Child Has Alzheimer’s Disease


Gustavo L. Franklina,∗ , Alex T. Meirab , Maira Tonidandel Barbosac,d ,
Hélio A.G. Teivee and Paulo Caramellic
a Departamento de Clı́nica Médica, Escola de Medicina da Pontifı́cia Universidade Católica do Paraná, Curitiba

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(PR), Brazil
b Departamento de Medicina Interna, Universidade Federal da Paraı́ba, João Pessoa (PB), Brazil
c Departamento de Clı́nica Médica, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo
Horizonte (MG), Brazil
d Faculdade Ciências Médicas de Minas Gerais, Belo Horizonte (MG), Brazil

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e Universidade Federal do Paraná, Serviço de Neurologia, Departamento de Medicina Interna, Curitiba (PR),

Brazil

Accepted 5 October 2021


Pre-press 8 November 2021
OR
Abstract. The significant increment in life expectancy, associated to the existence of high-performing older adults, and the
appropriate diagnosis of early dementias, lead to an uncommon scenario, of healthy parents accompanying their children
with Alzheimer’s disease or another dementia to medical consultations. Here, we reported three peculiar clinical vignettes
of patients diagnosed with a dementia, who were accompanied by healthy parents. This is a modern situation that tends to
become more frequent, and must be properly discussed, since multidisciplinary care and specific training are necessary.
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Keywords: Alzheimer’s disease, dementia, diagnosis, early-onset dementia, management

INTRODUCTION contrasts with the daily clinical suspicion, that is usu-


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ally higher when there is a clear family history.


Early-onset Alzheimer’s disease (EOAD) is On the other hand, a new concept has emerged,
defined as the diagnosis of Alzheimer’s disease (AD) that is of SuperAgers or high-performing older adults
in patients who present symptoms before the age of (HPOA), that are defined as individuals aged 80 years
65 years. EOAD comprises about 5% of cases of AD, or older with memory abilities similar or superior to
and, in comparison to late-onset AD, may present middle-aged subjects [2, 3]. The existence of HPOA,
different clinical characteristics, such as more aggres- and the appropriate diagnosis of early dementias,
sive course, less memory impairment, and greater lead to scenarios that are still rare, but which tend
involvement of other cognitive domains on presenta- to become more frequent, which is the situation of
tion, commonly leading to frequent delay in diagnosis healthy parents having their children diagnosed with
[1]. Although there is also greater genetic predisposi- dementia. The family impact generated by the decon-
tion, sporadic EOAD (sEOAD) is still more common struction of the natural idea that “the children will
than familial EOAD (fEOAD). This fact, however, grow up and take care of their parents in their old
age” is evident and must be well understood by health
professionals, so that integrated care and adequate
∗ Correspondence to: Gustavo L. Franklin, MD, PhD, Rua Gen- support can be provided.
eral Carneiro 1103/102, Centro, Curitiba, PR, 80060-150, Brazil. In order to illustrate this new situation, we present
E-mail: gustavolf 88@hotmail.com. below two characteristic clinical vignettes describing

ISSN 1387-2877/$35.00 © 2022 – IOS Press. All rights reserved.


56 G.L. Franklin et al. / When My Child Has Alzheimer’s Disease

uncommon EOAD scenarios and one more case in to memory complaints, the patient had behavioral
which a classical AD may also present an unusual, but changes, which, although incipient, were causing
very modern circumstance, of a cognitively healthy great distress to his parents. The patient did not meet
father with a child with AD. diagnostic criteria for another cause of dementia, and
cerebrospinal fluid AD biomarkers confirmed the pre-
vious diagnosis.
CLINICAL VIGNETTE 1: “HOW CAN MY
The patient was married and had two children, who
DAUGHTER HAVE DEMENTIA IF I
were the first to identify the symptoms. However, they
HAVEN’T?”
doubted somebody could have AD before the age of
60. In this case, there were no major conflicts regard-
A very lucid 94-year-old mother, a Japanese
ing the patient having an illness without his parents
descendant, brought her 67-year-old daughter for an
having, since the real family history was unknown.
assessment to determine why she had been having

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However, the patient’s condition was a huge burden
memory decline and difficulty performing some daily
for this family, and they raised an interesting ques-
tasks in the past three years. In the initial investi-
tion: is it possible for a son to reach senility before
gation, the patient scored 20 points out of a total
the parents?
of 30 points in the Mini-Mental State Examina-
tion (MMSE). She also presented signs of executive
dysfunction and mild behavioral changes, causing a
major impact on her functional autonomy and on
her quality of life. The patient had hypertension
and insulin-dependent diabetes mellitus. Diagnostic
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CLINICAL VIGNETTE 3: “MY
DAUGHTER NEEDS YOUR EVALUATION:
HER MEMORY HAS BEEN VERY BAD!”
workup indicated clinical diagnosis of probable AD
A very pleasant 99-year-old man (Mr. F), a wid-
dementia at a mild to moderate stage.
owed retired driver with one year of schooling, was
OR
The patient had three grown-up children and a
brought by a great-grandson to a geriatric consulta-
husband, but the family had not suspected the diag-
tion. The great-grandson told him that he was going
nosis of AD earlier, since they had never experienced
to pick him up at the end of the assessment when they
this situation with any close family member and also
were to call each other by cell phone.
because of a natural reluctance to consider the pos-
Mr. F was clearheaded and fully independent
sibility of someone having dementia if her parents
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for instrumental and basic activities of daily living


had not.
and was alone at the consultation. We conducted a
The patient’s father died due to complications after
global geriatric assessment, including a brief cog-
a stroke, at the age of 72. He had hypertension,
nitive evaluation. His MMSE score was normal for
diabetes, and dyslipidemia. The patient’s mother
the education-adjusted cutoff score for cognitive
was bilingual with Japanese as her main language,
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impairment. Geriatric Depression Scale score was


although she speaks Portuguese fluently. She has
0, indicating absence of depressive symptoms. Upon
hypertension and diabetes mellitus, controlled with
receiving his final report and our compliments on his
oral medication. Despite her age, she had no cogni-
health, Mr. F asked us to schedule an appointment for
tive complaints. The question that the mother brought
one of his daughters (Mrs. C) to administer the same
to us is certainly a philosophical challenge for every
tests we performed on him: “She is the one who needs
clinician who treats people with dementia: “But how
this consultation, doctor.”
can my daughter have dementia if I haven’t?”
After a few months, Mrs. C, aged 75 years and
with eight years of schooling, came to the outpatient
CLINICAL VIGNETTE 2: “IS IT POSSIBLE clinic accompanied by her father, Mr. F, already aged
FOR A SON TO REACH SENILITY 100 years, and by one of her six children. Global
BEFORE THE PARENTS?” geriatric assessment and ancillary tests confirmed the
diagnosis of mild dementia due to a clinically com-
A 57-year-old man, diagnosed one year before with patible AD.
early-onset AD was accompanied to the outpatient Mr. F, who is still in good health, is a very suc-
clinic by his family, including his children, and by cessful centenarian. He finds it surprising and quite
his healthy adoptive parents in their 80s. The parents unexpected to have a daughter “so young with AD”
did not have any neurological complaints. In addition (as he describes), but he is happy to know that she
G.L. Franklin et al. / When My Child Has Alzheimer’s Disease 57

is “well taken care of by the family and the medical situation represents an inversion of what is consid-
team”. Mr. F has a very interesting and uncommon ered “normal” during the life cycle and is certainly a
Brazilian name, “Felizardo”, which in Portuguese major challenge for parents, demanding capabilities
means very lucky and happy. of understanding, acceptance, and coping.
The professional approach of an early dementia
may have some peculiarities. First, early diagno-
DISCUSSION sis should be sought in an attempt to reduce initial
family burden. Also, clinicians must clearly commu-
The cases presented illustrate a modern phe- nicate the diagnosis, the perspective of evolution, and
nomenon of parents who have their children the therapeutic possibilities, avoiding vague terms
diagnosed with dementia. Among several factors or medical language. Still, it is important to under-
associated with the genesis of this situation, are stand the family context, to know if the parents are

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the recognition and proper diagnosis of people with the main caregivers, since despite the relatively pre-
dementia who would otherwise be misdiagnosed with served cognitive function, parents may have physical
a psychiatric disorder; the presence of environmental limitations, due to their age, such as frailty syndrome,
and epigenetic factors that add risk factors to geneti- among other age-related diseases. There is a need for
cally predisposed people; in addition to the existence closeness to other family members, and, frequently,

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of parents, called high-performing older adults. With caseworkers. Finally, there are legal implications of
the significant increment in life expectancy expe- having an elderly caregiver that must be taken into
rienced by most countries in the last decades, the account.
absolute number of people who reach advanced ages In this way, although the term senility, as men-
and still maintain good cognitive functioning and tioned by one of the parents, may have a broad
autonomy is also of note. Higher education, absence definition [8], it is crucial that healthcare profession-
of cardiovascular risk factors, physical activity, and als seek to educate the community that dementia is
OR
also genetic factors as the absence of the apolipopro- not a natural part of aging. In addition, specific train-
tein epsilon4 allele, may be protective factors of ing of the multidisciplinary team may be necessary
cognitive decline, and may be also related to HPOA to manage and deliver the best possible care within
[2–4]. In addition, epigenetic factors, transcriptional this new scenario, that may appear more frequently
regulations, and gene-environment interactions could in the near future.
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offer a plausible explanation of why close relatives


may not develop the disease or may present with the CONCLUSION
condition at such variable ages [5, 6].
The prevalence of dementia increases exponen- The situation of healthy parents, having their chil-
tially after the age of 65 years, usually doubling its dren diagnosed with AD or other dementia, has
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rate at each five-year interval [7]. Hence, it is indeed a relevant practical implication in society today.
much more common to see daughters and sons bring- The proper care may be more difficult and prepar-
ing their parents with cognitive changes to clinical ing healthy professionals to properly recognize and
consultation. The situation of a father bringing a child understand how to manage this condition is of
for consultation with cognitive complaints, usually extremely importance, since it tends to be more fre-
age-related, seems a contradiction, and an inversion quent with the natural aging of the population.
of the natural order of life. Moreover, the incidence
of EOAD has increased nowadays, and although the
DISCLOSURE STATEMENT
etiology and genetic basis remain poorly understood,
patients with EOAD are commonly excluded from
Authors’ disclosures available online (https://
observational and therapeutic studies.
www.j-alz.com/manuscript-disclosures/21-5234r1).
In the usual circle of life, parents take care of
their children until they become fully independent.
Later on, it is the children’s turn to deliver care to REFERENCES
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