Panel Study Investigating Status of Cognitively Impaired Elderly in Singapore

Change in quality of life of patient

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.

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Change in quality of care received by patient

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.

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Change in caregiver's resilience

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.

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Change in caregiver burden

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.

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Change in caregiver's ability to cope

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.

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Change in caregiver's levels of emotional distress

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.

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Change in caregiver's awareness of prognostic information

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

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Change in caregiver's grief experience

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.

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Change in resource utilisation for patient

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

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)

Total healthcare expenditure during the last year of life through analysis of medical bills

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.

Time frame: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)