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Chapter 3 Research Framework
are no “specific instruments or standards to guide researchers in this process” (p. 12).
Hence the general strategy taken by researchers is to determine the person’s
decisional capacity. Aselage et al. (2010) state that while some researchers may use
the MMSE (mini-mental state exam) in order to determine a person’s cognitive
abilities or capacity, this has become increasingly inadequate based on the
recognition that it does not take into consideration the abilities of the person with
dementia to expressly talk about his or her life, needs and experiences, but rather is a
snapshot of the ability to recall present day facts (Hellstrom et al., 2007).
Aselage et al. (2010) recommend a partnership approach to consent whereby the
researcher and participant spend time getting to know one another and that consent is
gained at each point of contact. Aselage et al. (2010) adds that this partnership
approach promotes thoughtful and respectful consideration of the person behind the
cognitive impairment. The Belmont report concurs with this approach and advises
that special provision may need to be taken when potential participants’
comprehension is severely limited, but that even people with reduced comprehension
should be given the opportunity to choose whether or not they wish to participate
and the extent to which they are able to participate.
The lack of consensus on how to attain and maintain consent for this vulnerable
population of older people in residential care and older people with dementia led
Black et al. (2010) to produce some guidelines. In their qualitative study in the USA,
Black et al. (2010) recruited nationally known experts on dementia and research
ethics, dementia researchers, and dementia caregivers and advocates. They used
interviews and focus groups with 40 experts and used content analysis to elicit
ethical guidelines for undertaking research with older people. This work concluded
that assent is an individual’s expression of approval and/or agreement while dissent
is an expression of disagreement or non-approval. Assent requires the ability to
indicate a meaningful choice and at least a minimum level of understanding, and
dissent might be used in the context of seeing informed consent from persons with
dementia. Black et al. (2010) advised that assent and dissent should be defined
broadly and based on an assessment of how adults who lack consent capacity can
express or indicate their preferences to be involved in research verbally,
behaviourally, or emotionally. Standards for seeking assent and respecting dissent