Option 3 – Dementia Link Worker

  1. Option description

1.1.Appointment of Dementia Link Worker co-located within Older Adults Mental Health Team
1.2.Description of change
Dementia Link Worker
Caithness – 1 x WTE Dementia Link Worker, co-located within Older Adults Mental Health Team.
The Dementia Link Worker will complement the work of health and social work professionals, our Dementia Advisor and our established services in Caithness.
Purpose of post
The CMHT Dementia Link Worker will be part of the range of services attached to the CMHT. The worker will provide advice, information and support to people with dementia, their carers and families who are in the process, or have been diagnosed with dementia.
1.3.Reasons for change
A systematic review of evidence on investing in services for early identification and intervention in dementia identified benefits for the person with dementia, their families and the cost of providing care; it improved quality of life, delayed the need for institutionalisation and provided a strong financial case for the identification, treatment and support of people with dementia.
  1. Evidence

2.1.Access
The introduction of a Dementia Link Worker will to work with the CMHT will promote choice and support person centred care for people where the aim is to reduce and manage crisis situations. It will provide a flexible approach, enabling individuals to remain with the people who care for them, in familiar surroundings, in their local community. People with dementia want to remain at home for as long as possible and alongside families and carers. They should have control and choice over the treatment options available to them in times of need. There are significant benefits to be had from remaining in familiar surroundings with carers as this can delay admission to hospital or other care settings.
Problems around access to services in rural areas are well known. Although not all people can be safely cared for in their home, we know from local experience that many people could have benefited from home care provision if it had been available. We are also aware of people refusing admission due to geographical issues. We can improve the care journey and outcomes for older adults with mental health problems if we had capacity to increase home treatment options.
2.2.Equity
The Scottish Government ‘HEAT’ target for post diagnostic support guarantees a minimum of 1 year of post diagnostic support for everyone diagnosed with dementia from April 2013 from a named Link Worker who is trained to a minimum of the enhanced level of the promoting excellence framework (1). This is a 3-year target, with services expected to be delivering the commitment to everyone newly diagnosed by March 2016 (though Boards are collecting data from April 2013). It will be essential that each person’s needs are assessed against each of the 5 pillars. The Link Worker will operate at a minimum of ‘Enhanced’ level on the Promoting Excellence framework and will have had specific training in post-diagnostic support and in the 5 Pillars model before undertaking this role. This proposal is in recognition of this and the current and increasing prevalence of dementia in the area.
The framework defines each level and the knowledge, skills and behaviours specific to the worker's role in relation to dementia. Rather than being hierarchical, the levels are concerned with levels of responsibility in relation to working with people with dementia which will vary greatly across organisations and sectors. Each level defines the expertise, specific to their role in relation to dementia, that a worker must have, rather than in relation to their seniority within the organisation or their profession.
Level’s on the Promoting Excellence Framework include:
The 'Dementia Informed Practice Level' provides the baseline knowledge and skills required by all staff working in health and social care settings including a person's own home.
The 'Dementia Skilled Practice Level' describes the knowledge and skills required by all staff that have direct and/or substantial contact with people with dementia and their families and carers.
The 'Enhanced Dementia Practice Level' outlines the knowledge and skills required by health and social services staff that have more regular and intense contact with people with dementia, provide specific interventions, and/or direct/manage care and services.
The 'Expertise in Dementia Practice Level' outlines the knowledge and skills required for health and social care staff who by virtue of their role and practice setting, play an expert specialist role in the care, treatment and support of people with dementia.
2.3.Improved outcomes
Outcomes for people with Dementia and their Carers would be to:
  • Understand the illness and manage its symptoms. “Self-management is a person centred approach in which the individual is empowered and has ownership over the management of their life and conditions”. (Long Term Conditions Alliance and Scottish Government, 2008).
  • Stay connected to their community, utilising the principles of person centred practice and focused on the outcome of working closely with families to maintain and build on their existing social networks including challenging stigma. We will also introduce the concept of ‘circles of friends’ to families which will also enhance the potential for recruitment of tele-care volunteers. Maintaining these supports is far easier than trying to rebuild them and far more cost-effective than replacing them with paid-for support.
  • Access peer support from other people with dementia and their families and carers
  • Plan for their future care - planning the shape of their future care from each person’s perspective, developing a personal plan that will guide each professional involved in their support, through the choices, hopes and aspirations that the person with dementia and their family have for their journey through dementia.
  • Plan for their future decision-making – setting up powers of attorney.
The above measures are designed to maximise people’s ability to cope with dementia, resulting in greater independence and quality of life, and helping them to maintain social networks and community connections and shape their future care so that it meshes with their natural supports, making best use of scarce resources.
2.4.Effective practice
  • Early provision of support at home can decrease institutionalisation by 22% (2). Even in complex cases, and where the control group is served by highly skilled mental health team, case management can reduce admission to care homes by 6% (3).
  • Carer support and counselling at diagnosis can reduce care home placement by 28% (4).
  • Post-diagnostic support can provide financial savings even if care home admission is delayed by only two weeks.
  • enable the person with dementia and carer to maintain and further develop community connections, to attend health and wellbeing enhancing activities i.e. local community groups, therapy groups, classes, lunch clubs etc
  • create capacity for CPNs eg, complex care management
  • Provide less intensive support and monitoring service where there are no other friends or family available to undertake this.

2.5.Sustainable
The introduction of appropriately trained link workers across Caithness will promote choice and support person centred care for people where the aim is to reduce and manage crisis situations. It will provide a flexible approach, enabling individuals to remain with the people who care for them, in familiar surroundings, in their local community. People with dementia want to remain at home for as long as possible and alongside families and carers. They should have control and choice over the treatment options available to them in times of need. There are significant benefits to be had from remaining in familiar surroundings with carers as this can delay admission to hospital or other care settings.
Problems around access to services in rural areas are well known. Failing to develop existing CMHS will result in increasing numbers of people removed from their homes and admitted unnecessarily to care settings. Transporting someone with dementia to unfamiliar surroundings, many miles away increases confusion, distress and fear. The situation is further complicated by the poor transport links resulting in limited contact between carers and their loved one, with some carers being prevented from visiting at all.
2.6.Culture and values
The Link Worker works flexibly with each person with dementia, and with the person’s family and natural support networks, introducing each of the 5 pillars in a personalised and holistic way and at the appropriate time for the person. Alzheimer Scotland Dementia Link Workers receive training at local, regional and national level and all Dementia Link Worker learning and development plans are aligned with the enhanced level of promoting excellence framework. Recognising the key roles of carers and families is also an essential part of the commitment and supports provided by the Dementia Link Worker, in helping design and implement a person-centred support plan.
  1. Risks

*CPN referrals have increased by 25% in the last year alone (205 in 2013-2014 compared to 164 the previous year) We know that referrals will continue to rise as the number of people living with dementia increases.
*CPNs already compensate for having limited services for older adults experiencing mental health problems including dementia.
Introducing a Dementia Link Worker, working as an integral part of the CMHT will increase capacity for delivery of the post diagnostic support ‘HEAT’ target and free up CPN resources for more complex clinical supports.
**Capacity to deliver a minimum of one year post diagnostic support will continue to remain an ongoing concern hence the submission of a separate proposal for the Alzheimer Scotland Dementia link worker to be introduced in Caithness.
*Information provided through reference group SWOT exercise.
**Support Workers Business Case Dementia/Older Adult Mental Health Work Stream.
  1. Implications for others

  • Prevents people with dementia from being admitted to potentially inappropriate care settings in times of crises
  • Enhances existing service provision due to increased capacity for post diagnostic support and improved access to specialised CMHT staff when required
  • Post diagnostic personal outcomes planning affords greater personalisation of responses, promotes and enhances connections to other holistic community resources and between these resources maximising use of existing community resources. Information contained in personal outcome plans; needs and preferences also helps inform future local service needs analysis and planning.
  • The above also assists in raising awareness of self-directed support and resources available in the community.

  1. Consultation

Consultation on this has already taken place at local level – proposal submitted at request of group.
The 5 pillars model for post diagnostic support and ‘HEAT’ target for post diagnostic support with link worker trained to minimum of enhanced level forms part of the National Dementia Strategy.
  1. References

(1) Department of Health (2008) The clinical and health economic case for early diagnosis and intervention services in dementia Transforming the quality of dementia care: consultation on a national dementia strategy http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_085570
(2) Scottish National Dementia Strategy http://www.scotland.gov.uk/Resource/0042/00423472.pdf
(3) Gaugler JE, Kane RL et al (2005) Early community-based service utilization and its effects on institutionalisation in dementia caregiving. The Gerontologist Vol 45 No 2 177-185
(4)Challis D, von Abendorff, Brown P et al (2002) Care management, dementia care and specialist mental health services: an evaluation. International Journal of Geriatric Psychiatry, 17:4, 315-25
(5)Mittelman M, Roth L et al (2007) Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry 15:9 780-789
^The Scottish Government -Promoting Excellence: A framework for all health and social services staff working with people with dementia, their families and carers. www.scotland.gov.uk

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