Providing support in the form of information, advice and access to services or social events is promoted as beneficial for people newly diagnosed with dementia and their families. This paper reports on key findings from an evaluation of a post-diagnostic support pilot project in Scotland addressing local service gaps, namely information provision, emotional and practical support and maintaining community links. Twenty-seven participants (14 people newly diagnosed with dementia and 13 family carers) were interviewed at two time points: T1 shortly after joining the pilot project and T2 approximately six months later, to ascertain their views on existing services and the support offered by the pilot project. A comparative thematic analysis revealed that the project facilitated increased independence (associated with increased motivation and self-confidence) of people with dementia. The project illustrates what can be achieved if resources are targeted at providing individualised post-diagnostic support, particularly where there are service delivery gaps.
Bowes, A., Mackintosh, S., & Andrews, J. (2009). Baseline assessment of current information provision to people with dementia and their carers. Edinburgh, UK: NHS Quality Improvement Scotland. Retrieved from http://tinyurl.com/nhsqisinfoprovision.
2.
CapusJ. (2005) The Kingston Dementia Cafe: The benefits of establishing an Alzheimer cafe for carers and people with dementia. Dementia4(4): 588–591.
3.
Carver, C. (1997). You want to measure coping but your protocol's too long: Consider the Brief COPE. International Journal of Behavioural Medicine, 4(1), 92–100.
4.
ClareL. (2002) Developing awareness about awareness in early stage dementia: The role of psychosocial factors. Dementia1(3): 295–312.
5.
ClareL.RothI.PrattR. (2005) Perceptions of change over time in early-stage Alzheimer’s disease: Implications for understanding awareness and coping style. Dementia4(4): 487–520.
6.
ConnellC.RobertsJ.McLaughlinS.CarpenterB. (2009) Black and white adult family members’ attitudes toward a dementia diagnosis. Journal of the American Geriatrics Society57: 1562–1568.
Department of Health, Social Services and Public Safety. (2010). Consultation on improving dementia services in Northern Ireland – A regional strategy. Retrieved from http://www.dhsspsni.gov.uk/showconsultations?txtid=42566.
9.
DijkhuizenM.ClareL.PearceA. (2006) Striving for connection: Appraisal and coping among women with early-stage Alzheimer’s disease. Dementia5(1): 73–94.
10.
FieldingN.ThomasH. (2002) Qualitative interviewing. In: GilbertN. (eds) Researching social life, 2nd ed. London, UK: Sage, pp. 123–144.
HertoghC. (2011) The misleading simplicity of advance directives. International Psychogeriatrics23(4): 511–515.
14.
InnesA.KellyF.DincarslanO. (2011) Care home design for people with dementia: what do people with dementia and their family carers value?Aging and Mental Health15(5): 548–556.
15.
Innes, A., Kelly, F., Bowes, A., Macintosh, S., & Robertson, J. (2011). ‘Facing dementia together’: Post diagnostic support pilot for people with dementia and their families in Renfrewshire and East Renfrewshire. Final project Evaluation Report, University of Stirling, Stirling.
16.
KitwoodT. (1997) Dementia reconsidered: The person comes first, Buckingham, UK: Open University Press.
LogsdonR. G.GibbonsL. E.McCurryS. M.TeriL. (2002) Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine64: 510–519.
19.
MasonE.ClareL.PistrangN. (2005) Processes and experiences of mutual support in professionally-led support groups for people with early-stage dementia. Dementia4(1): 87–112.
20.
McKillopJ.WilkinsonH. (2004) Make it easy on yourself! Advice to researchers from someone with dementia on being interviewed. Dementia3(2): 117–125.
21.
Mental Health Foundation (2011) Personalisation and dementia: a practitioner’s guide to self-directed support for people living with dementia, London, UK: Mental Health Foundation.
Moniz-CookE.Vernooij-DassenM.WoodsB.OrrellM.. Interdem Network (2011) Psychosocial interventions in dementia care research: The INTERDEM manifesto. Aging & Mental Health15(3): 283–290.
24.
MountainM.CraigC. (2012) What should be in a self-management programme for people with early dementia?Aging & Mental Health16(5): 576–583.
25.
PrattR.ClareL.AggarwalN. (2005) The ‘talking about memory coffee group’: A new model of support for people with early stage dementia and their families. Dementia4(1): 143–148.
26.
SampsonE.JonesL.Thune-BoyleI.KukkastenvehmasR.KingM.LeurentB.BlanchardM. (2010) Palliative assessment and advance care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention. Palliative Medicine25(3): 197–209.
