A Survey to Evaluate Post Diagnostic Care of Dementia Patients According to Their Carers and Relatives Dr Nelia Lourens, Cults Medical Group 2014

Aim Method

In the semi rural GP practice of Fyvie / Oldmeldrum in Aberdeenshire we had 67 patients with a dementia diagnosis in December 2013. Through a further search I identified patients who was diagnosed with demen-tia in the last 2 years and lived at home with a relative or carer. 12 patients has been identified and asked to complete surveys. This included patients with both Vascular Dementia and Alzheimer Disease. I found it most effective to phone and then arrange an appointment as many of them did not know me.The survey was designed by looking at the 5 Pillars of Post diagnostic care and evaluating them as to being achieved and how good they were rated according to carers (poor, fair, good or excellent); with a space for suggestions and free text. Of the 12 patients that were identified to be suitable only 8 forms were re-turned.

Of these 8 patients:Two– Alzheimer’s DiseaseOne – Mixed DementiaFive – Vascular dementia

Analysis1. Future decision Making: 4/8. Rated fair-good

Only 4 out of 8 people felt that they received help regarding future decision making including Power of Attorney(POA). Most pursued POA on their own, knowing the process through previous involvement with other family mem-bers.

2. Understanding Dementia and managing symptoms 4/8. Rated as goodCarers were noted as being a source of information for some. One person mentioned he/she was receiving PDC from the Alzheimer Scotland Link worker. Another person mentioned using the Alzheimer Scotland website for information.

3. Planning for future care: 2/8 Rated as mostly fairSome had care in place already. Others did not want to think about the fu-ture and some were in denial that things will be getting worse. ‘we are managing fine for now’.

4. Peer support: 4/8 Rated as fair mostlyOne lady commented that she felt ‘left out’ as she was from Glasgow and felt the Aberdonians were non inclusive therefore she did not attempt any peer support. Another comment was that it was provided by Alzheimer Scotland PDC Link Worker.

5. Community connections: 2/8 Rated as fairOne lady was on the waiting list for coffee morning in Inverurie. One lady was already attending this coffee morning. The survey was done on a semi rural area and some patients stay on farms or very remote areas. These were especially not keen to connect with others.

Application to Practice1. Weakest Pillar is nr 3 ’Planning for Future Care’. Could this be that relatives are in denial about further deterioration? Who should be ad-dressing this and how? 2. Pillar nr 5 ‘Community Connections’ was also rated poor. I suspect this could be geographical as patients who have lived rurally all their live might not be interested in socialising now.3. General Practitioners have a definite role in post diagnostic care – patients expect this. Alzheimer Scotland is certainly lifting the burden off GPs, but how can we ensure good communication and information sharing?4. What is the right time to do post diagnostic care? It’s a very sensit-ive balance to find. Two patients felt that there were too many people involved. GP, psychiatrist, Post Diagnostic Care provider and Com-munity Psychiatric Nurse5. Vascular Dementia patients tend to be those falling through the net regarding post diagnostic follow up. However this was not statistically demonstrated in this survey.

Personal LearningDementia is a very sensitive diagnosis and it needs skilled GPs and psychiatrists to make a timely diagnosis. The ongoing management and social involvement post diagnosis needs just as much skill. GPs have a vital part in the team looking after dementia patients. For many relatives of dementia patients GPs remain the primary contact person. For me the most valuable learning during the scholarship waslearning about the challenges that relatives face who live with a dementia patient.

In April 2013 the government introduced a year of post diagnostic care to all patients diagnosed with dementia. In Scotland this is now provided by a link worker assigned by Alzheimer Scotland. Alzheimer Scotland has designed the 5 pillars of post diagnostic support that should be provided.

As this is a relative new change I was interested in the level of support that has been provided in the past. As part of the GMS contract we should have annual dementia reviews and be able to provide a list of dementia patients. Very little is expected from GPs post diagnosis. I was keen to evaluate care according to the carer with the aim to identifying specific areas that GPs or link workers could address in future.

http://www.alzscot.org/campaigning/five_pillars