Cost of Dementia Study

Background

The cost of dementia study aims to estimate monetarized costs of dementia under different scenarios and inform policy on resources prioritization for dementia. To fill existing data gap, the TIP-CARD team conducted phone interviews to capture the variety of resource utilisation among people living with dementia or mild cognitive impairment (MCI) and the impact of caregiving on informal carers in the community.

 

Study participants and procedure

Purposive sampling was used and stratified by whether participants are service users of formal social care, have a diagnosis for dementia or MCI, and their dementia severity. Participants were eligible if they were dyads of people living with dementia (incl. MCI) living in the community and their family carer/informant, able to communicate in Mandarin/Cantonese, and able to provide informed consent. For people living with MCI who do not have a family carer/informant, they were also eligible if they do not have difficulty in communication and giving informed consent. The study recruitment was conducted from March 2021 to Feb 2022. For service users of social care, participants were recruited through public and private sectors which provides different types of social care facilities and services, including elderly community centres, day care centres, home care services, elderly resource centres, early detection services for dementia, mobile dementia service stations and other dementia services. To reach out more people who are not using social care services, participants were recruited widely through public and private housing estates, an online public talk event on dementia, leaflet and mass email promotion, and social media channels. All interviews were conducted by trained interviewer and an interview guide was developed to facilitate the interview process. 750 participants have completed our individual interview.

Measures

The measures used in the survey include:

  • Basic information of people living with dementia or MCI and their family carer/informant

  • Service utilisation of people living with dementia or MCI using locally adapted Client Service Receipt Inventory (CSRI)1

  • Functional status of people living with dementia or MCI using Chinese version of Modified Barthel Index2 and Hong Kong Chinese Version of the Lawton Instrumental Activities of Daily Living Scale3

  • Quality of life and general wellbeing of people living with dementia or MCI and their family carer/informant using EQ-5D-5L4 and Chinese Short Warwick-Edinburgh Mental Well-being Scale (C-SWEMWBS)5

  • Cognition ability of people living with dementia or MCI using Montreal Cognitive Assessment 5-minute protocol (MoCA-5 min)6

  • Care arrangement of multiple informal carers using locally adapted Resource Utilization in Dementia (RUD)7

  • Carer burden of family carer using the Chinese version of Zarit Burden Interview (ZBI)8

 

Data Analysis: Summary in Progress

Our team is working on data analyses. We will produce cost estimates by care type (i.e. health, social and informal care) and people with different sociodemographic and clinical characteristics, and examine the impact of caregiving on informal caregivers’ work and quality of life. The results will be also used as the baseline for the simulation modelling study.

Coming soon!

 

References:

  1. Beecham, J., & Knapp, M. (1992). Costing psychiatric interventions. In G. Thornicroft, C. R. Brewin, & J. Wing (Eds.), Measuring Mental Health Needs (pp. 163-183). Gaskell, London, UK.

  2. Leung, S. O., Chan, C. C., & Shah, S. (2007). Development of a Chinese version of the Modified Barthel Index-- validity and reliability. Clinical rehabilitation, 21(10), 912–922. doi:10.1177/0269215507077286

  3. Tong, A. Y. C., & Man, D. W. K. (2002). The validation of the hong kong chinese version of the lawton instrumental activities of daily living scale for institutionalized elderly persons: Occupation, participation and health. Otjr, 22(4), 132-142. doi:10.1177/153944920202200402

  4. Herdman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., Parkin, D., . . . Badia, X. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res, 20(10), 1727-1736. doi:10.1007/s11136-011-9903-x

  5. Sun, Y., Luk, T. T., Wang, M. P., Shen, C., Ho, S. Y., Viswanath, K., . . . Lam, T. H. (2019). The reliability and validity of the Chinese Short Warwick-Edinburgh Mental Well-being Scale in the general population of Hong Kong. Qual Life Res, 28(10), 2813-2820. doi:10.1007/s11136-019-02218-5

  6. Wong, A., Nyenhuis, D., Black, S. E., Law, L. S., Lo, E. S., Kwan, P. W., . . . Mok, V. (2015). Montreal Cognitive Assessment 5-minute protocol is a brief, valid, reliable, and feasible cognitive screen for telephone administration. Stroke, 46(4), 1059-1064. doi:10.1161/STROKEAHA.114.007253

  7. Wimo, A., Gustavsson, A., Jönsson, L., Winblad, B., Hsu, M. A., & Gannon, B. (2013). Application of Resource Utilization in Dementia (RUD) instrument in a global setting. Alzheimer's & dementia : the journal of the Alzheimer's Association, 9(4), 429–435.e417. doi:10.1016/j.jalz.2012.06.008

  8. Chan, T. S.-F., Lam, L. C.-W., & Chiu, H. F.-K. (2005). Validation of the Chinese version of the Zarit Burden Interview. Hong Kong Journal of Psychiatry, 15(1), 9–13.