Empowerment of young people who have a parent living with dementia: a social model perspective

Abstract

Background:Socially constructed disablement has marginalized young people in families where a parent has younger onset dementia (YOD). This has contributed to inadequate societal support for their complex situation. Impacts on such young people include significant involvement with mental health services for themselves. In this paper, we explored the young people's lived experiences in these families and the influencing factors to enable these young people to be included and supported within their community.Methods:In this qualitative research study, the social model of disability was used as the theoretical framework in conducting a thematic analysis of interviews with 12 participants.Results:Three themes emerged; invisibility highlighting the issues of marginalization; connectivity foregrounding the engagement of young people with family, friends and their social networks, and being empowered through claiming their basic human right to receive the age appropriate support they needed.Conclusion:The current plight of young people living with a parent with YOD demands a fundamental shift by society in developing inclusive cross-sectorial cooperation linking service providers across youth and dementia sectors. This requires working in partnership with the service users responding to the identified needs of individual family members.

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review

“…Their support needs differ considerably from those of people with dementia in later years (AM Beattie, Daker-White, Gilliard, & Means, 2002;Sansoni et al, 2016;Sansoni et al, 2014;Thompson, 2011;Tyson, 2007;Westera et al, 2014) as they still have comparatively high levels of physical fitness and are not wellmatched to join more sedentary services designed for older age groups (Pamela Roach, Drummond, & Keady, 2016;Tolhurst, Bhattacharyya, & Kingston, 2014). They also need to negotiate changing family dynamics with a particular focus on children and teenagers (Chow, Pio, & Rockwood, 2011;Gibson, Anderson, & Acocks, 2014;Hutchinson, Roberts, Daly, Bulsara, & Kurrle, 2016;Johannessen, Bruvik, & Hauge, 2015;Lockeridge & Simpson, 2013;Morhardt et al, 2015;P. Roach & Drummond, 2014;Shnall, 2015;Svanberg, Spector, & Stott, 2011;Thompson, 2011), accommodate changing care needs along the disease trajectory (Bakker et al, 2013;Bakker et al, 2010) and need to seek financial and legal advice as employment is discontinued and spouses give up work to become the main caregiver or take on work to compensate for lost income (Alzheimer's Society, 2015;Chaplin & Davidson, 2016;Picard, Pasquier, Martinaud, Hannequin, & Godefroy, 2011;Ritchie, Banks, Danson, Tolson, & Borrowman, 2015).…”

‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: grief and sadness in children and young people who have a parent with dementia

“…In arguing that a social model of disability can help to empower young people who have a parent living with dementia, Hutchinson et al (2015) call for the 'dementia sector' to embrace technology to establish 'greater connectivity' with young people who have a parent with dementia. Beginning with the recruitment of participants, our study demonstrated the extent to which young people make use of the internet and social media to obtain information and advice and to make contact with others who have had similar experiences and who understand what it is like.…”

“…Such an approach has not previously been used in this field. Hutchinson, Roberts, Daly, Bulsara, and Kurrle (2015) have advocated adopting a social model of disability (Oliver, 2009) approach to dementia. They argue this perspective is more likely to empower children and young people who have a parent with dementia because it could better inform the development of more appropriate and inclusionary interdisciplinary services than can follow from the 'traditional' and exclusionary medical model.…”

Desenvolvimento De Habilidades Para Promoção Da Saúde Na Pessoa Deficiente: Análise De Conceito

“…Como se identifica, esse conceito está fortemente atrelado à compreensão de empoderamento. A promoção dos meios para que os cidadãos e/ou as comunidades possam ter controle sobre suas próprias vidas e, em consequência, sobre as decisões relevantes a serem tomadas, proporcionando assim autonomia, é definida como empowerment ou empoderamento (12) . Empoderar os cidadãos em relação aos cuidados da sua própria saúde, com base em várias práticas, é desenvolver suas habilidades para o autocuidado.…”