Researchers argue that new instruments are needed to measure quality of life for dementia patients

Researchers at the Marie Curie Palliative Care Research Unit at University College London have highlighted how the current tools for measuring quality of life are inadequate for use with people with advanced dementia, and are calling for new ways to demonstrate the value of care at the end of life.

The study, entitled “A framework for understanding quality of life in individuals without capacity” is among the first to address the need for new ways of understanding quality of life in patients who have conditions like advanced dementia, and who lack the capacity to evaluate their own well-being.

Without the correct tools, it is difficult for healthcare resources to be fairly allocated to those who need them most. Current tools cannot properly measure the benefits of treatment for people with advanced dementia.

Currently, instruments that measure either physical function or capability to do things are not suitable. For example, it may not be possible for people with advanced dementia to answer questions that involve subjective measures of functioning - such as freedom from pain, of feelings of anxiety and depression.

Dr Louise Jones, co-author of the research from Marie Curie Palliative Care Research Unit at UCL, said: “Current models that demonstrate the value of treatment and care are difficult to apply to care received by people with limited capacity. This is because near the end of life the typical measures of successful care – improving health, extending disease free life – do not apply, as by definition people are getting sicker and death is coming.

“The problem that remains could be described as the ‘caring problem’ – how to measure and value treatment where the aim is to provide care for people such as those with advanced dementia for whom significant improvement is not possible.

Capability-based assessments which assume people are able to undertake the tasks they choose are also not appropriate for people with severe dementia because they have little independence, and are unable to make informed decisions about themselves or their care.

Jeff Round, co-author and health economic researcher, added: “It is important that the resources available for healthcare are allocated in a way that is fair to all. It is our belief that the current tools disadvantage people with limited capacity. We are arguing for a new set of tools that would enable us to value the care that people receive as they approach the end of their lives; tools that are consistent with the allocation criteria used by bodies such as the National Institute for Health and Social Care Excellence. These patients deserve to be given the same access of opportunity to healthcare resources as all other patients. Our framework would place caring at the centre of the decision making process for a vulnerable patient group.”

Researchers are calling for new instruments to be developed. Their suggestions for a new framework include:

• Tools: tools for measuring quality of life should relate directly to the individual, and should look at how to better measure the care and compassion needed for patients with advanced dementia at the end of life.
• Objective assessments: As people with advanced dementia are unable to complete a self-completion questionnaire, any assessment of their health should be based on criteria that can be assessed objectively.

–ENDS–

Reference

1 Round J, Sampson E.L & Jones L (2013).  A framework for understanding quality of life in individuals without capacity. Quality of Life Research, online first 22 Aug 2013;  DOI 10.1007/s11136-013-0500-z