Changes in the Perception of Personal Dignity Over the Course of Dementia

NCT04443621 | Unknown

• 1 other identifier: NU20-07-00100
• Study Type: observational
• Target: 500
• Locations: 1 country
• Sites: 5

Brief Summary

Dignity is an integral part of quality of life (QoL). Older adults often face with situations that are related with the development of dementia and that might significantly affect their feeling of personal dignity. The aim of the project is to investigate the changes in the perception of personal dignity amongst older adults with dementia (OAwD) over the course of three years and to define factors that threaten their dignity. A mixed methods design (longitudinal prospective study) will be used. In the quantitative part, a battery of Czech questionnaires will be used, and a translation and validation of a Czech version of the ACE-III will be carried out. The qualitative part will include in-depth interviews (narrative and semi-structured). The sample will comprise of OAwD living in home setting. Knowledge of the changes in the perception of personal dignity and related factors may aid the healthcare staff in choosing interventions that support and preserve dignity of OAwD as a significant part of their QoL. The project is a follow-up of a previous project No. 16-28628A.

Conditions

Dementia; Dignity

Keywords

dignity; dementia; older adult; perception

Outcome Measures

Primary Outcomes (4)

• Addenbrooke's Cognitive Examination III (ACE-III)

  To create a Czech version of the ACE-III and to conduct a psychometric validation

  12 months

• Patient Dignity Inventory (PDI)

  To ascertain how the assessment of personal dignity changes over the course of two years

  24 months

• Factors affecting dignity

  To identify sociodemographic and clinical factors perceived as a threat to dignity (including age, sex, level of education, living arrangement, social life, frequency of social visits, telephone contact with relatives/friends, and the daytime spent alone, illnesses, depression, self-sufficiency etc).

  24 months

• Differences in the perception of personal dignity

  To define the differences in the perception of personal dignity among OAwD when using quantitative (PDI-CZ) and qualitative (in-depth interview) methods.

  24 months

Secondary Outcomes (1)

• Dignity among the different types of dementia

  24 months

Study Arms (2)

participants with early stage dementia

Subjects with diagnosed any type of dementia at an early phase (MMSE score 20 - 25 points) - for longitudinal study (three phasis).

Behavioral: questionnaire; Behavioral: in-depth interview

participants without dementia

Subjects without dementia with MMSE score 26 - 30 points (for validation of ACE-III).

Behavioral: questionnaire

Interventions

questionnaire BEHAVIORAL

Questionnaire battery for assessment of dignity, cognition, self-sufficiency, and depression.

participants with early stage dementia; participants without dementia

in-depth interview BEHAVIORAL

Individual in-depth interviews with OAwD on the topic of dignity (two interviews with each respondent at a 12-month interval) .

participants with early stage dementia

Eligibility Criteria

• Age: 60 Years - 100 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Older adults aged ≥60 years.

You may qualify if:

• Group I.: age ≥60 years; lives at home; diagnosed with dementia (MMSE score 20 - 25 points), ability to consent to participate in the research; in contact with a family caregiver at least once a week.
• Group II: age ≥60 years; lives at home; MMSE score 26 - 30 points, ability to consent to participate in the research.

You may not qualify if:

• for both groups: severe psychotic disorder; severe cognitive impairment (severe hearing, visual or speech impairment), and terminal stage of caner or non-cancer disease.

Sponsors & Collaborators

• Palacky University: lead
• University Hospital Hradec Kralove: collaborator
• Faculty Hospital Kralovske Vinohrady: collaborator
• University Hospital Olomouc: collaborator
• University Hospital Ostrava: collaborator

Study Sites (5)

University Hospital Hradec Kralove

Hradec Králové, Czechia

Location

Palacky University

Olomouc, Czechia

Location

University Hospital Olomouc

Olomouc, Czechia

Location

University Hospital Ostrava

Ostrava, Czechia

Location

Faculty Hospital Kralovske Vinohrady

Prague, Czechia

Location

Related Publications (2)

• Kisvetrova H, Bretsnajdrova M, Juraskova B, Langova K. Personal dignity in people with early-stage dementia: A longitudinal study. Nurs Ethics. 2024 Nov;31(7):1258-1270. doi: 10.1177/09697330241244495. Epub 2024 Apr 5.

  PMID: 38578289 DERIVED

• Kluzova Kracmarova L, Tomanova J, Cernikova KA, Tavel P, Langova K, Greaves PJ, Kisvetrova H. Perception of dignity in older men and women in the early stages of dementia: a cross-sectional study. BMC Geriatr. 2022 Aug 18;22(1):684. doi: 10.1186/s12877-022-03362-3.

  PMID: 35982424 DERIVED

MeSH Terms

Conditions

Dementia

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Helena Kisvetrova, PhD

  Faculty of Health Sciences Palacky University Olomouc

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: June 19, 2020
• First Posted: June 23, 2020
• Study Start: July 1, 2020
• Primary Completion: December 31, 2023
• Study Completion: June 30, 2024
• Last Updated: September 25, 2020

Record last verified: 2020-09

Locations

CZ (5)