A measure of subjective burden for dementia care: the Caregiving Difficulty Scale--Intellectual Disability.
Use the 38-item CDS-ID to measure staff caregiver burden when supporting adults with both intellectual disability and dementia.
01Research in Context
What this study did
Hagopian et al. (2005) built a new 38-item rating scale. Staff who support adults with both intellectual disability and dementia fill it out. The scale asks how hard, tiring, or stressful each part of care feels.
The team checked that answers stay steady over time. They also looked at whether higher scores match more challenging client behaviors. This is called internal consistency and validity.
What they found
The new tool, called the CDS-ID, held together well. Staff gave similar answers when they repeated the scale. Higher scores linked with tougher behaviors, so the scale does what it should.
In short, the CDS-ID gives a quick, reliable number for how heavy the care load feels to staff.
How this fits with other research
Two years earlier, McCarron et al. (2002) made the CAS-ID. That scale counts how many minutes staff spend on each task. The CDS-ID does not count minutes; it captures how hard the work feels. Using both tools gives you time data and feeling data.
Pettingell et al. (2022) later reviewed every informant tool for dementia in ID. Their list includes the CDS-ID, so the 2005 scale is still on the modern menu.
Huang et al. (2014) asked a different question. They screened caregivers for depression with the PHQ-9. They found that poor self-rated health predicted low mood. The CDS-ID adds the burden side of the same story: heavy burden may point you to caregivers who need that PHQ-9 screen next.
Why it matters
You now have a short, free scale that turns "this shift is killing me" into a number you can track. Run it at intake and after any training or staffing change. If the score jumps, look at extra supports: shorter shifts, more visual aids, or respite. Pair it with the CAS-ID for time data and the PHQ-9 for caregiver mood. A five-minute survey can save staff burnout and keep clients stable.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Print the CDS-ID, give it to the direct-care team at this week’s staff meeting, and graph the total score in your next supervision note.
02At a glance
03Original abstract
BACKGROUND: It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more restrictive settings for persons with intellectual disabilities (ID) and AD. This study focused upon the development of a measure of subjective burden, The Caregiving Difficulty Scale - Intellectual Disability (CDS-ID) as a first step in addressing this measurement deficit. METHODS: An existing caregiver subjective burden scale, the Caregiving Hassles Scale (CHS) was adapted for use with 203 staff caregivers of persons with ID and AD. Preliminary testing of existing CHS items and proposed new items was carried out in two countries, Ireland and the USA. Confirmatory factor analysis with the existing items and exploratory factor analysis with existing and proposed new items for the scale was used to establish the content and test the psychometric properties of a revised scale, the CDS-ID. RESULTS: On the existing CHS items, staff carers appeared to experience greater subjective burden than has been reported for family caregivers. However, the psychometric properties of the CHS found with this population were poor. Factor analysis produced a revised scale, the CDS-ID with three subscales with Cronbach alphas ranging from 0.75 to 0.93 and 38 items overall. CONCLUSIONS: This new scale when used with objective burden and other scales offers an opportunity to more systematically measure the difficulties staff experience when caring for persons with ID who present with symptoms of AD.
Journal of intellectual disability research : JIDR, 2005 · doi:10.1111/j.1365-2788.2005.00670.x