Dementia: Some Guidance

Caring for people with dementia in the community is one area which is currently expanding. Recently the Alzheimer Europe calculated that with an increasing, and increasingly ageing, UK population the overall numbers of people with dementia; estimated in 2018 to be 1,031,396 will by 2050 be 1,977,399. A rise from 1.56% of the overall population to 2 .67% in 2050. There is pressure therefore to get this right now ahead of this expansion.

There is no clear way to provide all the people and their carers who require support with what they will need, so new ways to provide effective care need to be considered. This blog will look at 3 existing resources that are already being used in Scotland.

The first resource we suggest that you consider using is the winner of the Scottish Digital Health and Care Award 2020; which was NHS Lanarkshire’s Online Post Diagnostic Support Website which you can access from HERE

Two things to be aware of before you go to the site. It might have been designed for people receiving post diagnostic support but the information and advice is far more extensive than this. It has been tailored to suit Lanarkshire, so some sections discuss services and processes available in Lanarkshire which may or may not be available within the NHS Ayshire and Arran area.

The advantage of using this resource is that the information that it provides is validated and conforms to NHS Scotland standards (the information sources and hwere to get more information are all ij the links given within the site). There is 24/7 access to information which you can return to easily. People living with dementia and their carers can all access it when desired. It can be used to enhance staff knowledge of dementia, post diagnostic support and the services which might be available to improve people’s support and experience.

Topics the resource covers include understanding the illness, Power of Attorney, Driving, Anticipatory Care Planning, support for carers and lots more. Please explore this resource and use as you see fit. Note that the easiest way to find the site is to type “Dementia NHS Lanarkshire” into Google.

The second resource you should consider using is the Social Care Institute for Excellence (SCIE) Dementia Gateway. The Dementia Gateway provides access to information, guidance, resources and training for anyone supporting people with dementia. It is a very extensive resource and worth taking a bit of time to explore. There is so much on it designed to be utilised by health and social care staff in the community both as a resource and as education that you will find something your team can utilise very quickly. A note of caution though. It has been designed for England and Wales which is particularly important when the information given refer to English legislation. You can access the Gateway HERE.

The third resource we suggest that you look at is work done by the “Focus on Dementia” Group who are part of Health Care Improvement Scotland. They are currently working on improving care co-ordination for people with dementia and their carers so that this becomes more integrated.

Their work can be found at https://ihub.scot/improvement-programmes/focus-on-dementia/integrated-care/ They have set about trying to identify the critical success factors for integrated care co-ordination of people with dementia in the community. The focus of their work has been Midlothian. Their overview of the Dementia Care Co-ordination Critical Success Factors is available on the site and is discussed in the video that you will find there. A more detailed report on the critical success factors is due to be published but the list of factors is something you might already be able to use. There is also other work done by Focus on Dementia that you can access from this site.

Delirium in the Community

Delirium is a common and serious medical condition that results in a person experiencing a sudden change in their behaviour. The onset of delirium always indicates the presence of a physical disorder or acute illness.
Any person can get delirium but it is more common when a person is older, has a cognitive or sensory impairment, is very ill, or requires complex treatments.
Of those aged 80 and older living at home, one in 10 people could have delirium at any time. In care home residents, six in 10 could have delirium at any time.
Nurses and nursing assistants working in these settings are well placed to recognise delirium in the people they care for.
It is important to remember that delirium is particularly common in people with dementia – if you see sudden changes in the physical or mental health of a person living with dementia don’t discount delirium. The types of changes to look out for a listed HERE. Early recognition of delirium could help prevent the person falling over, becoming even more unwell and/or being admitted to hospital. In some cases, early recognition of delirium might even prevent their death.

Delirium can be difficult to recognise and sometimes the signs are subtle. That is why any change in a person should trigger the question “Could this person have delirium?” A useful tool to consider using here is called SQiD (the Single Question in Delirium). The single question: ‘Do you think [name of patient] has been more confused lately?’ is usually put to a member of the family or a friend but if you know the person well you may be able to answer the question yourself. Although this seems simple SQiD is almost as good at delirium detection as psychiatric interview and other more sophisticated identification tools. See Sands et al (2010) for example.

It is always better to rule out delirium than miss it completely. Remember, if you identify delirium, it is very likely that the patient has a medical condition that requires assessment and treatment urgently.

Nationally, Scotland has recently adopted its own set of Guidelines regarding the Risk Reduction and Management of Delirium called SIGN Guidleine 157.

Health Improvement Scotland published a patient information booklet to complement Scotland’s first clinical guideline for delirium. These can be used alongside resources produced by @ihubscot to improve delirium care across Scotland: http://bit.ly/37M5vcu

SIGN Guideline 157 asks that health professionals in Scotland adopt a standard assessment tool called the 4AT tool and this should be used for identifying patients with probable delirium in emergency department and acute hospital settings. They go on to suggest that the 4AT tool should also be used in community or other settings for identifying patients with probable delirium. If you are unfamiliar with the 4AT then now would be a good time to adopt it and get your team used to using it.

Identifying delirium is however only part of the issue. It is really important that you and your team create, develop and follow a local escalation plan which provides you and your team with instructions regarding what to do if delirium is suspected. It is worth checking if your organisation has an existing delirium escalation plan in place. If not, you might find the template and the information on this RCN site very useful. https://www.rcn.org.uk/clinical-topics/older-people/delirium/delirium-champion

Anticipatory Care Planning

Throughout this series of blogs, you will hear repeatedly that our population is ageing and that is really good news.  However, we are also aware that the likelihood of having long-term, multiple chronic or complex conditions increases with age.  So, as healthcare professionals need to have models of care that are designed to meet the many needs of individuals.

Anticipatory Care Planning (ACP) is part of that support. So, what is Anticipatory Care Planning?  It’s about ‘thinking ahead’ and planning action or taking action before something happens.

It involves having detailed collaborative conversations between the person, their family and their care team about future care and preferred options. The process can also be used to explore how individuals can participate in their own care as an extension of self-management.

Anticipatory care planning conversations can be uncomfortable to initiate however with practice it becomes easier and as your experience develops you will become more confident in your approach.  Some people may wish to start the conversation themselves which is great, however others may experience anxiety when considering their future and may wish to avoid having such discussions until they are ready.  This is when your coaching skills will be of great value.

There will be many opportunities to start the process during care interactions and these conversations should focus on the person’s health, well-being and their actual clinical conditions in an attempt to reduce possible crises.  ACP’s also identify where  the person wishes to be  cared for and though collaborative discussion,  it helps identify their own personal outcomes.

Anticipatory Care Planning conversations are completely voluntary and are in no way  legally binding. We know people often change their wishes as circumstances change, so it is vitally important that care preferences are recorded in an ACP with any changes highlighted, dated and communicated to the wider care team.   Example ACP’s can be found at  https://ihub.scot/project-toolkits/anticipatory-care-planning-toolkit/anticipatory-care-planning-toolkit/

Anticipatory Care Planning conversations should be:

  • Collaborative: Individuals and carers are at the centre of their ACP conversations
  • Ethical:  Respect for the person’s values, beliefs and preferences for care, by including what matters to them
  • Comprehensive: Clear communication of key information (e.g. individuals or care providers involved in care or support requirements)
  • Informative communication: Establishes a robust pathway of communication sharing (including e-sharing), which can be helpful to other colleagues, care providers or agencies involved in care. Improving individuals understanding of their health and well-being (health literacy) is essential to person-centred care models which incorporate effective communication, self-management and essentially patient safety
  • Self management approach:
    • Demonstrates the unique symptoms the person may experience and simple actions they can take to address them
    • Enables early identification of health change or health needs, and relevant interventions required to support recovery or reduce crisis
  • Personal:  Information that is important to the individual or carer
  • Relevant: Highly important matters e.g. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) status and  Power of Attorney
  • Realistic: Recovery goals that reflect the individual’s hopes, aspirations and preferences e.g. “Things that I must do to keep well” or “What is important to me and why?” Such measures may help to facilitate hope and encourage active participation in the ACP process.
  • Carer considerate: Enabling alternative arrangements or contingency plans in the event of the carer becoming unwell, thereby reducing the need for acute admission to hospital.

(Barrie, Steel & Loughlin 2019, in Essentials of Nursing Adults, Eds: Elcock, Wright, Newcombe & Everett, Sage, London)

Please take some time to watch some of the personal experiences of those who have undertaken developing an ACP before and hear how important this was to them. 

https://ihub.scot/project-toolkits/anticipatory-care-planning-toolkit/anticipatory-care-planning-toolkit/videos/