Panel Study Investigating Status of Cognitively Impaired Elderly in Singapore

We will assess the quality of life of patient by asking caregivers the list of comorbidities and acute medical conditions that patient has, patient's experience of symptoms, patient's functional status and behaviours that patient exhibits.

We will assess the quality of care received by patient by asking the caregiver of any use of tube-feeding, physical restraint and other medical interventions; as well as checking with the caregiver if they are satisfied with the care provided for patient.

We will assess caregiver's resilience through the abbreviated version of the Connor-Davidson Resilience Scale (CD-RISC), the CD-RISC 2. Only 2 items will be adapted from CD-RISC. For each item, it is rated on a 5-point scale, ranging from 0 to 4 as follows: "not true at all", "rarely true", "sometimes true", "often true" and "true nearly all of the time", with higher scores reflecting greater resilience.

We will assess caregiver burden through modified Caregiver Reaction Assessment (CRA) Instrument. This instrument captures 5 domains of caregiver reaction and we adopted 4 out of the 5 domains. Each item is scored on a five-point likert scale, ranging from 0 to 4 as follows: "strongly disagree", "disagree", "neither agree nor disagree", "agree" and "strongly agree". We amended and included "not applicable" to the scale as well. The items constituting a particular domain are averaged to generate subscale scores. A higher score on the subscales indicate greater negative effects of caregiving in those domains.

We will assess caregiver's ability to cope through the BriefCOPE instrument. This instrument measures 14 conceptually differentiable coping reactions; each of which comprises of 2 subscales. The scale ranges from 0 to 3 as follows: "I haven't been doing this at all", "I've been doing this a little bit", "I've been doing this a medium amount" and "I've been doing this a lot". This measure does not compute the overall score. The scales are analysed separately to see what its relation is to other variables.

We will assess caregiver's anxiety and depression through the Hospital Anxiety and Depression Scale (HADS). The instrument comprises seven questions for anxiety and seven questions for depression. Each item comprises of a four point (0-3) response category. Hence the possible score ranges from 0 to 21 for anxiety and for depression. A score of 0 to 7 for either subscale is regarded as being in the normal range, a score of 11 or higher indicates probable presence of mood disorder and a score of 8 to 10 is suggestive of the presence of the respective state.

We will assess preferences of caregivers for the disclosure of prognostic information of patient.

We will assess caregiver's grief experience through the MM Caregiver Grief Inventory- Short Form (MM-CGI-SF). The instrument consists of 3 domains (each domain has 6 items) with a total of 18 items. For each item, the scale ranges from 1 to 5 as follows: "strongly disagree", "disagree", "somewhat agree", "agree" and "strongly agree". The subscale is computed by summing up the scores of the 6 items for each domain. Higher scores may indicate a need for formal intervention or support assistance to enhance coping, while lower scores may indicate denial or a downplaying of distress or positive adaptation if the individual is not showing other signs of suppressed grief. The total grief level is computed by summing up the scores for the 18 items.The higher the score, the greater the level of grief experienced by the caregiver, vice versa.

We will assess the healthcare resource utilisation of patient and caregiver through modified Resource Utilisation in Dementia Lite (RUD-Lite) Instrument.

We will calculate total healthcare expenditure during the last year of patient's life as the sum total of expenditures incurred at in-patient clinics, out-patient clinics, and visits to emergency department and on prescription drugs.

We will assess caregiver's perception of patient's end-of-life care after patient's death through the Satisfaction With Care at the End of Life in Dementia (SWC-EOLD) scale. The scale has 10 items, each measured on a 4-point likert scale ranging from 1 to 4 as follows: "strongly disagree", "disagree", "agree", "strongly agree". The total SWC-EOLD score is computed by the summation of all 10 items (range of 10 to 40), with higher scores indicating more satisfaction.

Post-patient death bereavement adjustment will be assessed through the Brief Grief Questionnaire. This is a 5-item interview instrument for screening complicated grief. For each item, the scale ranges from 0 to 2 as follows: "not at all", "somewhat" and "a lot". The total score is computed by summing up the score for each item. If the total score is 5 or more, it may be suggestive of the presence of the syndrome of complicated grief.

We will assess the cultural stigma associated with dementia by asking in-depth questions such as caregiver's perception of dementia before and after patient's diagnosis, caregiver's experience of outsiders' responses and attitudes towards dementia and how physicians give the diagnosis of dementia.