scholarly journals Disclosing a Diagnosis of Alzheimer’s Disease: Patient and Family Experiences

2001 ◽  
Vol 28 (S1) ◽  
pp. S67-S71 ◽  
Author(s):  
André P. Smith ◽  
B. Lynn Beattie
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Members ◽  
Disease Patient ◽  
Memory Problems ◽  
Family Conference ◽  
The Family ◽  
Disclosure Of Diagnosis ◽  
Assessment Beliefs ◽  
Collection Methods

Background:Informing patients and families about the diagnosis of Alzheimer’s disease (AD) is a complex ethical and practical issue. This qualitative study explores the psychosocial impact of disclosing a diagnosis of AD on patients and family members.Methods:This study identified 14 patients and their accompanying family members undergoing a multidisciplinary assessment for dementia at an outpatient clinic for AD and related disorders. Of the group, three patients had probable AD and five had possible AD as per NINCDS-ADRDAcriteria. Six patients were not demented as per DSM IIIR criteria. Disclosure of diagnosis occurred, in a family conference, within six to eight weeks of the assessment. Data collection methods included observation of the assessment and the family conference as well as in-depth home interviews with family members and with each patient whenever feasible. The interviews were transcribed verbatim and coded for recurrent themes.Results:A total of 40 individuals across 14 families participated in this study. Only two families chose not to have the patient attend the family conference. The disclosure of a diagnosis of probable AD brought on an experience of relief in three families, marking the end of a lengthy period of confusion about the nature of memory problems. Patients diagnosed with possible AD and their families interpreted how indicative the diagnosis was of the presence of the disease with varying degrees of certainty depending on pre-assessment beliefs about the cause of memory problems. In the group diagnosed as not demented, four patients had complaints of forgetfulness likely related to minor depression. The disclosure of a diagnosis of no dementia did not produce the anticipated relief. Two patients continued to believe their memory problems were caused by the early onset of AD or some other “organic” problem.Interpretation:This study reveals that disclosure of the diagnosis of AD to patients and family members is generally beneficial but that there are variations in the understanding of the diagnostic information, particularly in instances where the assessment results are ambiguous.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

Family members favor disclosing the diagnosis of Alzheimer's disease

2005 ◽  
Vol 17 (4) ◽  
pp. 679-688 ◽  
Author(s):  
Ker-Neng Lin ◽  
Yi-Chu Liao ◽  
Pei-Ning Wang ◽  
Hsiu-Chih Liu
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Emotional Disturbance ◽  
Family Members ◽  
Life Activity ◽  
Negative Attitudes ◽  
Slowing Down ◽  
The Family ◽  
Neurological Patients ◽  
Age Range

Background: Past negative attitudes towards patients with Alzheimer's disease (AD) have changed in recent years. However, the disclosure of AD diagnosis to patients and family remains an unresoved issue. In this study, we surveyed the family members of neurological patients in Taiwan for the purpose of assessing their attitudes towards the disclosure of AD diagnosis.Methods: The study sample consisted of family members (150, age range 23–89 years, mean 55.0±14.3) who accompanied patients to a neurology outpatient clinic from September 15 to November 24, 2003. The subjects were given an Attitude Questionnaire on AD Disclosure.Results: An overwhelming majority (93%) of subjects favored disclosure of the diagnosis if, hypothetically, they personally were affected by AD. However, a smaller majority of family members (76%) favored disclosure of the diagnosis to current AD patients. Reasons for favoring disclosure included a patient's or family member's right to know, the possibility of assistance in coping with and understanding dementia, and slowing down the progression of the disease by early treatment, as well as the increased probability of accepting treatment and life activity training. Reasons for favoring the withholding of disclosure included the risk of causing the patient emotional disturbance, worsening the disease, the irrelevance of disclosure to drug therapy, and the possibility of causing suicidal ideation. Subjects' attitudes towards disclosure of AD diagnosis were unaffected by their knowledge of dementia, the presence of a family member with AD, their role as the primary caregiver, the length of time that AD symptoms persisted, and the number of hours per day spent in caring for AD patients.Conclusions: In Taiwan, family members of neurological patients strongly favor being informed and the disclosure of AD diagnosis to the family.

scholarly journals Quality of life of elderly with alzheimer’s disease: a comparative study between the patient’s and the caregiver’s report

2010 ◽  
Vol 18 (1) ◽  
pp. 26-32 ◽  
Author(s):  
Keika Inouye ◽  
Elisete Silva Pedrazzani ◽  
Sofia Cristina Iost Pavarini ◽  
Cristina Yoshie Toyoda
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Life Assessment ◽  
Quality Of Life Assessment ◽  
Patient Reports ◽  
The Family ◽  
Final Score ◽  
High Level

This paper aimed to compare the reports of patients and caregivers about how they perceive quality of life (QoL) in general and each of its dimensions in elderly with Alzheimer’s Disease (AD). The participants were elderly diagnosed with AD (n=53) attended by the Exceptional Medication Program in a city in the interior of Sao Paulo; and their respective family caregivers. The QoL measures were obtained through the Quality of Life Assessment Scale on Alzheimer’s Disease. The results showed statistically significant differences in the “memory” (p<0.05) and “you in general” (p<0.005) dimensions. Regarding the final score, the average in the patient’s version was 29.32 points (sd=6.27), against 28.33 points (sd=5.58) in the family version, p>0.100. Although the relative and patient reports were not identical, the results pointed to a high level of consistency among information.

scholarly journals A Case Report of a 37-Year-Old Alzheimer's Disease Patient with Prominent Striatum Amyloid Retention

2017 ◽  
Vol 14 (4) ◽  
pp. 521 ◽  
Author(s):  
Yoo Hyun Um ◽  
Woo Hee Choi ◽  
Won Sang Jung ◽  
Young Ha Park ◽  
Chang-Uk Lee ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Case Report ◽  
Disease Patient

scholarly journals Exacerbation of psychotic symptoms as clinical presentation of Wernicke encephalopathy in an Alzheimer's disease patient

2020 ◽  
Vol 21 (5) ◽  
pp. 185-187
Author(s):  
Nozomu Uchida ◽  
Mayumi Ishida ◽  
Izumi Sato ◽  
Takao Takahashi ◽  
Daisuke Furuya ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Clinical Presentation ◽  
Disease Patient ◽  
Psychotic Symptoms ◽  
Wernicke Encephalopathy

scholarly journals Late Onset Alzheimer Dementia in Patients with Genotype E3/E4: A Case Report

2021 ◽  
Vol 9 (C) ◽  
pp. 5-9
Author(s):  
Anak Agung Ayu Putri Laksmidewi ◽  
Chiquita Putri Vania Rau
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Case Report ◽  
Mini Mental State Examination ◽  
Late Onset ◽  
Apoe Genotype ◽  
Time Orientation ◽  
Alzheimer Dementia ◽  
The Family ◽  
State Examination

BACKGROUND: Dementia is one of the leading causes of disability and dependence in elderly worldwide. Epidemiological statistics indicate that data show that at about 60–80%, Alzheimer’s is the most common type of dementia. Alzheimer’s is also the third-most prominent cause of death in elderly. CASE REPORT: A 72-years-old male patient, complained by the family often forgets about things that have just been done for 3 years ago. According to the family, patient also often discussing the same things repeatedly. Patients tend not to have the initiative to start his daily activities. The family admitted that patient also became often angry and felt suspicious for the last 2 years. From the mini mental state examination showed disturbances in time orientation and recall; from Montreal Cognitive Assessment Ina found disturbances in visuospatial, fluency, abstraction, delayed memory, and time orientation; accompanied by activities of daily living (ADL) and instrumental ADL disorders. Patient also performed a molecular examination of the apolipoprotein E (APOE) genotype and the genotype E3/E4 was detected. CONCLUSION: The function of the APOE gene, in particular APOE4, is the most emphasized genetic relationship in late onset Alzheimer’s disease. It is proposed that blocking the action of APOE4 can delay or stop Alzheimer’s disease progression.

scholarly journals A qualitative investigation of the psychosocial services utilised by care-givers of patients with Alzheimer's disease and related dementias in southwestern Uganda

2021 ◽  
pp. 1-14
Author(s):  
Catherine Abaasa ◽  
Celestino Obua ◽  
Edith K. Wakida ◽  
Godfrey Zari Rukundo
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Medical Care ◽  
Family Members ◽  
Medical Care System ◽  
Psychosocial Services ◽  
Care Givers ◽  
Care Giving ◽  
Southwestern Uganda ◽  
Care System

Abstract Individuals with Alzheimer's disease and related dementias often require substantial support from other people. Much of the care-giving is from family members who eventually experience physical, emotional and financial stress, depression and fatigue. In Uganda, families are a cornerstone in providing care to individuals with dementia. However, little is known about the psychosocial supports available to the care-givers in their care-giving role. We assessed the psychosocial supports available to care-givers of individuals with Alzheimer's disease and related dementias in southwestern Uganda. We conducted 34 in-depth interviews at three referral hospitals at which care-givers identified by the treating clinicians were approached for informed consent. The interviews were conducted until thematic saturation was reached, and the interviews were translated and transcribed. Thematic content analysis was used to analyse the data. Care-giver supports were structured into two major themes: medical supports utilised and supports beyond the medical care system. Medical supports highlighted information provided by medical professionals. Supports beyond the medical care system included emotional and instrumental supports provided by religious leaders, the local communities and family members. Care-givers for individuals with dementia in southwestern Uganda receive educational support from medical practitioners, and unstructured emotional and instrumental supports from the family and community.

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