Meeting the needs of informal dementia caregivers

Informal caregivers of people with dementia commonly provide care with high intensity over a long period of time, helping the person with dementia stay in their own home for as long as possible. Caring for someone with dementia is very demanding for informal caregivers, and it can cause high levels of stress, which often lead to physical, psychological, emotional, social and financial problems.

“Informal dementia caregivers show important needs in diverse areas at all stages of the disease. It is important to understand those needs in order to support informal caregivers and to maintain or improve their quality of life, as well as their ability to perform care", says Stephanie Kipfer, lead author of the study, ‘Reliability, validity and relevance of needs assessment instruments for informal dementia caregivers: a psychometric systematic review’.  

To understand informal caregivers’ needs, a systematic and person-centered instrument is needed, says Stephanie: "It helps to evaluate the many needs of these people and to consequently give them the help and information they need“, she explains.  Unfortunately, existing evaluation instruments are often limited.

 "Some of the existing evaluation instruments are very time consuming and therefore difficult to perform in clinical practice. Others do not consider different dimensions of caregiver needs or are not developed or tested in a rigorous ways, which makes their use questionable for research and clinical practice", says Stephanie.

Eighteen articles published between 1996 and 2019 and reporting on 14 different needs assessment instruments were included in the review. The authors adhered to the new guidance on conducting systematic reviews of measurement properties, as developed by the JBI Methodology Group and published in the online JBI Reviewer’s Manual in November 2019.

When asked about the findings that were the most surprising, Stephanie responded that “needs assessment was nearly always used at one specific point in time.”

“This is surprising, as the needs may change over time and across the duration of caring, for example, such an assessment could be useful to evaluate the impact of interventions. However, assessing an instrument’s ability to detect changes over time is demanding in this context, as caregivers have to fill in the same questionnaire twice within a short period of time, which adds further demands and consequently may increase stress further. While developing instruments, researchers must also respect the vulnerable situation of informal dementia caregivers and the persons affected”, she says.

The implications for clinical practice and research are important: “By describing which instruments exist and which are appropriately validated, we support clinicians and researchers in deciding which instrument best fits their purpose. For example, a scoring system allows for ready comparison of needs at different time points, which can be helpful to evaluate support interventions”, Stephanie says. 

“Although we found two instruments, which are partly validated, research needs to go beyond that. We need to develop better needs assessment instruments for informal caregivers of persons with dementia. In particular, a more robust theoretical framework about the core dimensions of needs and the relationship between needs and other relevant outcomes for informal dementia caregivers is needed as a basis for further development.”

Reliability, validity and relevance of needs assessment instruments for informal dementia caregivers: a psychometric systematic review
Kipfer, S. & Pihet, S.
JBI Evidence Synthesis: April 2020 - Volume 18 - Issue 4 - p 704-742

doi: 10.11124/JBISRIR-2017-003976