RESUMEN
BACKGROUND AND OBJECTIVES: People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia. RESEARCH DESIGN AND METHODS: Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples. RESULTS: The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge. DISCUSSION AND IMPLICATIONS: Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.
Asunto(s)
Adaptación Psicológica , Demencia , Discapacidad Intelectual , Humanos , Demencia/psicología , Discapacidad Intelectual/psicología , Masculino , Femenino , Persona de Mediana Edad , Anciano , Investigación Cualitativa , Cuidadores/psicología , Esposos/psicología , Relaciones Interpersonales , Adulto , Entrevistas como AsuntoRESUMEN
Objective: to measure the impact of the 'My Power of Attorney' media campaign on the number of new power of attorney (POA) registrations in Scotland. Setting: POA registrations in Scotland processed by the Office of the Public Guardian during January 2010 to June 2015. Methods: multilevel Poisson models for POA registrations nested by council and annual quarter were run using Markov chain Monte Carlo methods, adjusting for time, campaign (variable ranging between 0 and 5 dependent on intensity of campaign measured by the number of media platforms received) and offset term mid-year population estimate for those aged 25 years+/65 years+. Results: POA registrations saw a reduction between 2010 and 2011 but overall, increased between 2010 and 2015. POA registrations rose by 33.3% in Glasgow City between 2013 and 2014, when the campaign began, while the rest of Scotland saw a rise of 17.3%. When the data were modelled, Relative Risk (RR) of a POA registration increased with increasing intensity of campaign, so that in an area in receipt of the full campaign was RR = 1.31 (1.28, 1.34) that of an area with no campaign. Between council variation persisted after adjustment for campaign (Variance = 0.041 (0.011)). Conclusions: during the period of the campaign, area-level increases in POA registrations were observed associated with the 'My Power of Attorney' timing and location, in an approximate dose-response relationship with campaign intensity, suggesting that this is likely to be due to the campaign that began in Glasgow City.