Dementia memory disorders
Conditions
Interventions
None listed
Sponsors
Universiteit Maastricht
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: (1) The patient has a diagnosis of dementia meeting DSM IV TR criteria following an assessment by a clinical professional. (2) The person with dementia has a Clinical Dementia Rating indicating mild or moderate degree of dementia (i.e. scores 1 or 2) and scores 24 or less on the MMSE. (Note: overall in each country the intention is that the sample should comprise 50% people with CDR of 2). (3) The patient is not receiving regular assistance from a paid worker with personal care, on account of his/her dementia, such as help with dressing/undressing; washing/ bathing/ showering; toileting; feeding/drinking; taking medication. (Note: *regular* is defined as at least once per week; *paid worker* includes those paid by health and social care services and those paid direct by the person and his/her family). (4) A professional judges that additional assistance with personal care is likely to be considered / required within one year. (Note: The concept of need for additional assistance is rather ambiguous, and a subjective risk estimate will be used to assess this need. This estimation will be made by any health care professional who is involved in the care of the patient and is in a position to judge the level of care needed. This will include multiple sources, including psychologists, general practitioners, memory clinic staff members, and other health care or social care professionals. (5) The person with dementia has a carer who is able and willing to participate also and is in contact at least once per week. The carer does not have to be residing with the carer, they could be a relative, friend or neighbour in regular contact. (6) The person with dementia and their carer consent to participate. (7) The person with dementia is competent to participate in the current study
Exclusion criteria
Exclusion criteria: (1) The person with dementia has no identified carer in regular contact. (2) The person with dementia or their carer is not able to complete the assessments due to communication/ language/ hearing/ understanding/ literacy problems that cannot be compensated for. (3) The person with dementia or their carer has a terminal condition or comorbidities (including long-standing severe mental illness) contributing to a significant level of disability. (4) The person with dementia or their carer has a life-long learning disability or severe physical impairment that would prevent them from being able to complete the assessments. (5) The person with dementia resides in a care home or nursing home or has been resident in a care home or nursing home (e.g. for respite) during the previous six months. (6) The person with dementia has a diagnosis of alcohol-related dementia or of Huntington*s disease.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Service use (measured by means of the RUD, Resource Utilization in Dementia) Needs (measured with the CANE, Camberwell Assessment of Needs in the Elderly) | — |
Secondary
| Measure | Time frame |
|---|---|
| Measures Measures that the person with dementia and the carer will complete together with the interviewer: * A service use checklist to capture services that are being used, those not used and reasons for non-use will be developed specifically for this project. * A brief questionnaire to collect socio- demographic information will be developed specifically for this project. Measures that the person with dementia will complete with the interviewer: * Quality of life will be measured with the 13-item Quality of Life- Alzheimer*s disease Scale (QOL-AD). This measure has reported good validity and reliability and it has been recommended in a European consensus paper. * Health related quality of life of the PwD will be assessed with the EQ-5D-5L. This measure has been validated in a number of European countries and has recognised potential as a health utility measure. * The ICECAP-O is a recently developed outcome measure that is not yet available on the EU level, and which is being validated as part of this project. * Health-related quality of life will be measured with the DEMQOL-U a brief measure that will be used to inform economic evaluation. * Quality of the relationship with the primary carer will be measured by the 5 item Positive Affect Index (PAI). * The participant*s cognitive functioning will be assessed with the Mini Mental State Examination (MMSE). Measures that the carer will complete about themselves: * The carer*s anxiety and depression will be assessed with the 14 item Hospital Anxiety and Depression Scale (HADS). * *Perseverance time* * a single item simple estimate of how long the carer considers they could continue if the situation remains unchanged * Stress specific to care-giving will be assessed with the 15 item Relative*s Stress Scale (RSS). * The Locus of Control of Behaviour Scale, a 17 item self-report scale which provides a measure of both internal and external locus of control. * The carer*s sense of coherence | — |
Countries
Netherlands
Outcome results
None listed