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P8: Post diagnostic support

Detailed programme, abstracts and presentations

P8: Post diagnostic support

P8.1. Allied health professionals: connecting people connecting support

HUNTER Elaine

Background: Allied health professionals have the expertise to support people with dementia, their families and carers to live well with dementia (Scottish Government 2012). The role of the author focuses on bringing the skills of this group of professionals to the forefront of dementia practice and linking their therapeutic skills to the needs of people with dementia and their families.

Aims: To share the expertise of allied health professions we developed leaflets and publications whilst also looking to social media. We looked beyond the traditional boundaries to share their knowledge and considered social media which is growing in influence (Holdsworth et al 2013)

Methods: In June 2104 we launched a weekly blog called “Let’s Talk about Dementia”. (www.alzscot.org/talking_dementia) hosted and supported by Alzheimer Scotland and led by the author, an allied health professional.  The blog shares the practice of allied health professionals focusing on a range of topics from diet, physical activity to keeping engaged with your community.  The contributors are practicing clinicians, staff from Alzheimer Scotland, students and academics. Within the blog there are links to resources, video content and comments are encouraged. 

Key Findings*

In the first eight months we had

  • 21,760 hits from 40 countries
  • 323 people receiving the blog by email
  • An understanding the top areas of interest were falls prevention, an enabling home environment, communication tips, work and dementia
  • 263 interactive comments from people living with dementia, carers and professionals

Conclusions: Through the blog the expertise of allied health professionals is accessible and the reach of the information is international. Importantly we are connecting to people living with dementia and their families creatively and innovatively.  The blog offers allied health professionals a new way to connect to people with dementia and their families, providing a platform for individuals to voice their views and share ideas.

*The results will be displayed as charts, diagrams and comments demonstrating the impact and reach of the blog until end August 2015.

P8.2. Assessment and follow-up by dementia teams - the Norwegian Dementia plan 2015

MICHELET Mona, ENGEDAL Knut, SELBÆK Geir

Background: The Norwegian Dementia Plan 2015 was launched in 2007.  One of the aims was to organize dementia teams or dementia coordinators in primary health care in all 428 Norwegian municipalities, in order to assist family doctors in diagnosing persons suspected of having dementia and to provide post-diagnostic support to patients and family carers.

To evaluate the work we did a survey among 190 teams/coordinators, which had been in action for one year or longer. The topics were organization, routines and time used for assessments, different types of follow-up and other activities.  Each team reported medical information about three patients they had recently assessed. 

Results: Only 65% of the dementia teams/coordinators had assigned time for their dementia- specific work.  The typical team consisted of 3-4 experienced registered nurses, occupational therapists or other health care professionals. Cooperation with family doctors, and these doctors’ knowledge on dementia was reported as challenging, although 58% of the patients were referred to the teams by their family doctor.  The mean time spent per year on follow-up per patient and their carers was 5 hours.

The persons assessed had a mean age of 81 years, 63% were females and mean scores were;  MMSE 20.4, Clock drawing test 2.8 of 5 points, IQCODE 4.2 and Cornell scale for depression in dementia (CSDD) 8.6 points.  However, only 41% of the assessments included the CSDD.  The carers scored a mean of 19.3 points on the Relative’s Stress scale but only 52% of the carers had filled in this scale.

Conclusion: The dementia teams express that they will need more resources to fulfil their tasks in the future.  Future assessments by dementia teams need to be more complete and there should be more focus on follow-up. Increasing the knowledge of dementia among family doctors should be a priority in the future.

P8.3. Post diagnostic support in dementia – the contribution of the allied health professionals in Scotland

GROAT Alison

Background: There are approximately 90,000 people living with dementia in Scotland.  Within Scotland’s National Dementia Strategy (2013-2016) there is a commitment to improving post diagnostic support. It is recognised that the Allied Health Professionals (AHP National Delivery Plan, 2012) have the expertise to support people with dementia, their families and carers to live well with the condition, however we had no national overview of what was currently happening in this area.        

Aim: The work set out to develop a national survey to enquire about the current contribution of the AHPs in relation to post diagnostic support in dementia.  The scoping exercise also aimed to understand the links between the Alzheimer Scotland Dementia Link Workers (who are involved with people for a minimum of one year post diagnosis) and the AHPs.

Method: A Consultation Group was formed with AHP Leads from the Health Boards across Scotland.  Engagement took place with key stakeholders and a literature review was carried out.  This informed the Link Worker and AHP surveys.  Follow up interviews with 16 participants was also part of the process.

Key Findings: Key findings will be presented and include:

  • There is a lack of clarity around the role of, and the referral process to,  the AHPs working in post diagnostic support
  • There are variable links between the AHPs and the Link Workers
  • Partnership working produces benefits for people with dementia and carers

Conclusion: The initial findings will be published outlining recommendations on the way forward.  We are now developing a change programme to improve access to Allied Health Professionals for both the Alzheimer Scotland Link Workers and people living with dementia.  The aspiration is that having access to this expertise in the first year will enhance the ability of people with dementia to live well within their own homes.  

P8.4. “Work keeps me well”: the benefits of continued employment following a diagnosis of dementia

RITCHIE Louise, TOLSON Debbie, DANSON Mike

It is estimated that there are around 38,000 people of working age (under 65) with dementia in the UK. Given the current emphasis on early diagnosis and the increase in state pension age across Europe it is likely that the number of people in employment when diagnosed with dementia will increase. Drawing on the active ageing literature, this paper aims to explore the potential benefits of supporting continued employment for people with dementia in terms of health, social and psychological wellbeing. The study adopted a qualitative approach using case studies (n=15). Each case study is based around a person aged between 50 and 66 with a diagnosis of dementia or mild cognitive impairment and who is still in employment or had left in the last 18 months. Case studies involved interviews with the person with dementia, a family member and a workplace representative and analysis of relevant documents. Of the 15 case studies, eight people with dementia continued paid employment post diagnosis and seven were retired due to ill health at the point of diagnosis. A cross case thematic analysis was conducted to explore similarities and differences in the experiences of case study participants. The results show differences between the experiences of people who continued employment post diagnosis and those who retired due to ill-health. Reflecting on the experiences of participants, the themes to be presented include ‘work keeps me well’; ‘identity as a worker’; ‘leaving work’; ‘family dynamics’ and ‘workplace perspectives’. Overall, the results show that continued employment can have a positive impact on the lives of people with dementia and their family. This will be discussed in terms of the implications for post diagnostic support, employment policy and support in the workplace. The importance of appropriate support for leaving employment and adjusting to retirement in situations where continued employment is not possible will also be highlighted.  

P8.5. Advance directives and dementia – Perspectives from people with dementia and their informal caregivers

SCHMIDHUBER Martina, SCHALLER Sandra, FREWER Andreas, KOLOMINSKY-RABAS Peter

Objective: Advance directives aim to support the autonomy of people with dementia. The person without dementia can define how she/he would be treated in the case of dementia. However, what do people with dementia and their relatives know about the possibilities and boundaries of advance directives? We want to present the first results of a survey in the European Metropol Region Nürnberg (Germany).

Methods: In face-to-face interviews with open und structured questions, focusing on the possibilities and boundaries of advance directives, we identified the level of knowledge of people with dementia in early stage and their informal caregivers. We asked among other what they think about the significance of the advance directive.

Results: The first results from the pilot group are from 24 persons with dementia, aged 53 to 92 years, and their 24 informal caregivers, aged 31 to 81 years. Both, people with dementia in early stage and their informal caregivers are not always sure how binding the advance directive is. Nearly 12 % of them are not sure, if the physician is bounded on the directive (4 persons with dementia, 1 informal caregiver). More than 14 % of the persons do not know if the directive could be revoken (5 persons with dementia, 2 informal caregivers). It is also doubtful for nearly 50 %, if they could make directives especially for the case of dementia (7 persons with dementia, 16 informal caregivers). Sometimes the opinions are wrong: e.g. 7 informal caregivers think that it is not possible to revoke an advance directive.

Conclusion: Our results show that people are not always sure about the possibilities and boundaries of advance directives. More information and enlightenment is necessary to support the idea of advance directives: people’s autonomy in the case of dementia.

The research is funded by: Emerging Fields Initiative (EFI), Friedrich-Alexander-University Erlangen-Nürnberg (FAU), Human Rights in Healthcare.

 

 
 

Last Updated: Monday 28 September 2015

 

 
  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene
 
 

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