Experiences and Perspectives of Persons with Dementia

Communication Empowerment Framework: An integrative framework to support effective communication and interaction between carers and people living with dementia

“…Since higher-level conflict is particularly likely to endure, and promote significant distress ( Kelly et al., 2011 , 2015 ), a recognition of higher-level conflicting goal(s) is generally required to regain control. In turn, increased awareness of internal goals is important for re-establishing perceived control and hence resilience ( Dias et al., 2015 ; Harmell, Chattillion, Roepke, & Mausbach, 2011 ).…”

“…Research indicates that the acquisition of knowledge and skills can support carer resilience and the maintenance of positive relationships with those cared for ( Donnellan, Bennett, & Soulsby, 2015 ); for example, understanding how memory changes influence communication can enable more accurate mentalization. In particular, communication-focused training interventions can enhance perceived coping and control ( Dias et al., 2015 ; Eggenberger et al., 2013 ; Harmell et al., 2011 ).…”

“…Training programmes need to provide techniques for responding to daily challenges that encourage the resolution of internal conflicts between higher-level goals, because this will increase the scope for control and thus promote resilience ( Alsawy et al., 2014 ; Dias et al., 2015 ; Harmell et al., 2011 ; Morris et al., 2016 ). As noted above, reorganizing and resolving higher-level conflicts is also likely to improve communication, because it reduces the likelihood of external conflict.…”

“…Carers may face many challenges, but they are also capable of identifying the positive aspects of their role (Brodaty & Donkin, 2009). Furthermore, people living with dementia can draw on considerable resources of resilience (Desai, Desai, McFadden, & Grossberg, 2016). One method for supporting both carers and people living with dementia is training for carers.…”

Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability

“…While the general dementia-related literature contains work on the perspectives of adults who are diagnosed with dementia, with reflections on experiences and on what the progression of dementia may mean (Botek, 2016; Desai et al, 2016), most of the literature on dementia-related experiences in the intellectual disability field is drawn from the perspectives of proxies, such as family or staff carers (Bowers et al, 2009; Carling-Jenkins et al, 2014; Davis, 1999; Hammond and Benedetti, 1999; Lin et al, 2014). Limited subjective experiential information is available from the perspectives of adults with intellectual disability (Blackman and Thompson, 2014; Bowey and McGlaughlin, 2005; Lloyd et al, 2007; Watchman, 2014) and almost none is available drawn from research on personal perspectives.…”