Alzheimer Scotland’s Facing Dementia Together post diagnostic pilot project was funded by the Scottish Government for February 2009 to June 2011. Working in partnership with East Renfrewshire CHCP, Renfrewshire CHP, and Renfrewshire Council, the project set out to provide support to people who had recently received a diagnosis of early stage dementia, and their families.

The project demonstrated that there are five key pillars of post-diagnostic support which are all essential in a post-diagnostic service:

  • understanding the illness and managing symptoms
  • supporting community connections
  • peer support
  • planning for future care
  • planning for future decision-making.

Executive summary

The project

  1. The Facing Dementia Together post diagnostic pilot project was funded by the Scottish Government for February 2009 to June 2011. Working in partnership with East Renfrewshire CHCP, Renfrewshire CHP, and Renfrewshire Council, the project set out to provide support to people who had recently received a diagnosis of early stage dementia, and their families.
  2. An independent evaluation was carried out by Dementia Services Development Centre (DSDC) and an evaluation report is available from the Scottish Government (doc).

Background

  1. In Scotland there are approximately 82,212 people living with dementia, with 1,548 in East Renfrewshire and 2,575 in Renfrewshire (Kinnaird, 2011).
  2. The Scottish Government has made dementia a national priority and launched a National Strategy on Dementia in June 2010 (Scottish Government, 2010). Post-diagnostic support for people with dementia and their carers is one of the two key areas of the strategy.
  3. The widespread lack of post-diagnostic support denies people the opportunity to develop their understanding of the illness, enhance their coping skills and improve their chances of being cared for in their own homes for longer. Early identification and intervention in dementia has been shown to improve quality of life, and delay the need for institutionalisation (Department of Health, 2008, and Gaugler et al, 2005). Carer support and counselling after diagnosis can reduce care home placement by 28% (Mittleman, 2007).

Referrals

  1. The project received 66 referrals and supported 133 people, 56 people with dementia and 77 family members.
  2. It was anticipated that two thirds of referrals would come from the Renfrewshire area. In fact, sixty two percent of referrals (41) came from East Renfrewshire and thirty eight percent (25) from Renfrewshire.

Project activity

  1. The project offered different levels of input, according to need. This included one-off enquiries, a few individual contacts, attendance at workshops, ongoing low level contact and attendance at regular drop-in cafés.
  2. Types of support provided included information, advice, signposting, and emotional and practical support to help the person and their families/supporters to understand and come to terms with living with dementia.
  3. The project assisted people with dementia and their families/supporters to put in place financial and legal arrangements to maximise their control over future decisions made on their behalf (e.g. powers of attorney, advance statements).
  4. The project supported people to maintain the important relationships in their lives and remain involved in their communities, continuing to enjoy social and recreational activities.
  5. For those who were able to and wished to do so, project staff facilitated more detailed advanced planning using person centred planning tools.
  6. As the project evolved, opportunities for peer support were developed including informal drop-in cafés and a series of weekly workshops delivered over six consecutive weeks for people with dementia and family members. Sessions included information sessions and separate peer support groups for people with dementia and family members.

Project outcomes

  1. Project outcomes were evidenced by the results of the independent evaluation and by internal evaluation.
  2. People with dementia and their families/supporters felt better informed, through the provision of 1:1 information and of workshops.
  3. People with dementia and their families/supporters felt equipped with skills to manage better the challenges of living with dementia, though the workshops and through 1:1 advice on and support to implement coping strategies.
  4. Twenty three people with dementia were supported to put legal and financial arrangements in place for the future, with guidance through the process of setting up powers of attorney, and in one case, guidance for the family to arrange guardianship. Nineteen people received additional welfare benefits and nineteen received council tax discounts or exemption.
  5. People with dementia and their families were able to make contact with, and benefit from the support of, other people with dementia and their families, through dementia cafés, workshops and occasional social events and evaluation showed that this was very highly valued.
  6. People with dementia and their families were in a position to take control of the supports they needed not only in the present, but also for the future, enabling them to live at home as independently as possible through individual support, cafés and workshops which gave them the information they needed. Nine people with dementia and their families were facilitated to do person centred planning.
  7. Twenty four people with dementia and their families were provided with information on self-directed support (SDS) and one family was supported to receive SDS. This enabled them to shape their support in the best way for their lives, maximising the benefit from the allocated budget and minimising the need for crisis intervention.
  8. Family members were fully involved in the process where person-centred planning was carried out. Many others felt unable to think or plan ahead too far in the future.
  9. Local authority and health staff were provided with information on the benefits of personalisation for people with dementia through presentations and meetings in a range of settings.
  10. Local authority and health staff were involved in the person-centred planning sessions, enhancing their ability to inform and support people with dementia and carers in designing creative patterns of services and natural supports which will best support them in the future.

Challenges

  1. Key challenges related to the project’s innovative nature and short duration, and include slow initial referral rate, lower numbers of referrals than expected in Renfrewshire, and delay in the evaluation getting started.
  2. Local authority eligibility criteria limited scope to demonstrate that the provision of a small upfront budget to enable people with early dementia to maintain their lives and natural supports could potentially delay or reduce the need for paid care later in the illness.
  3. It takes time for people to want to plan ahead and enabling forward planning is not a straightforward or linear process.
  4. Natural supports and previous activities had sometimes been lost by the time the person had received a diagnosis.

Key learning

  1. Where people have lost community connections and natural supports, re-establishing old connections was right for some people but establishing new connections was the preference of others, due to their awareness of changes in their abilities and self-esteem.
  2. Peer support is of central importance to both people with dementia and to their partners and families.
  3. Peer support is helpful in encouraging people to access other supports such as educational workshops.
  4. People with dementia and their family members need time to come to terms with and understand their diagnosis and its implications for the future before they are able to plan ahead for their future support needs. Such planning will generally happen only in the context of a supportive relationship with a professional.
  5. The value in future care planning has been clearly demonstrated.
  6. Person Centred Planning Tools MAP and PATH have been successfully adapted for use with people with dementia.
  7. For people with dementia living alone, transport to attend cafés or workshops was important.

Conclusions

  1. The project found that there is a clear need and demand for post-diagnostic support. People with dementia and their families/friends need significant support, and want ongoing low level input and continued contact with a dementia specialist, who they can ask for information, advice and guidance.
  2. Peer support with people going through the same stage of the illness, but also somewhere to get information as required, and be signposted or referred to services as needed is important. Attending cafés and workshops as a couple or family helped families to adapt to the challenges of living with dementia, as each person was able to develop insight into how the other person experienced life with dementia.
  3. The project has demonstrated that there are five key pillars of post-diagnostic support which are all essential in a post-diagnostic service. There are:
    • understanding the illness and managing symptoms
    • supporting community connections
    • peer support
    • planning for future care
    • planning for future decision-making.

Recommendations

  1. A comprehensive post-diagnostic service should be a mainstream part of the support offered to people with dementia and their partners and families immediately after diagnosis.
  2. The post-diagnostic service should incorporate all five key pillars of post-diagnostic support.
  3. The service should offer the opportunity for a short period of intensive support for those who need it, but also an ongoing point of contact for light–touch advice, information and support.
  4. The person with dementia and their family members should be offered education courses/information sessions that they can both attend. Attending as a couple or family, helps people to adapt to living with dementia as a couple or family.
  5. Dementia cafés should be provided to offer ongoing access to peer support for both people with dementia and their partners, families and supporters. Consideration should be given to offering these specifically for people with dementia and their families who are at the same stage of the illness. Consideration should also be given to providing help with transport, particularly for those people with dementia living on their own.
  6. Continuation of cafés with a programme of invited speakers beyond the end of the pilot project. The cafés would act as a point of support for those newly diagnosed with early stage dementia and an ongoing point of contact where people can get information, support, advice and guidance as well as being signposted/ referred on to other services as required.
  7. Forward planning needs to be offered at the right time, once the person with dementia and their families have been able to cognitively and emotionally process the diagnosis and come to terms with it, and what it means for their future lives.
  8. The project should be continued in Renfrewshire and East Renfrewshire, to build on the work of the pilot.

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