Dementia Training Carer Engagement 2024

Summary of findings

“Our lives have been turned upside down, but who’s looking after us?”

The Dementia Training team were awarded funding from the National Lottery Community Fund starting from April 2024 to enable us to continue and develop our work supporting unpaid carers of people living with dementia.

We were very keen to involve carers in the development and delivery of our workshops so we carried out a series of engagement events to determine what is important to carers in terms of training; where the gaps lie; and what training and education we can develop to better support carers.

We met with 17 different groups across Scotland, reaching 106 carers. Many thanks to the groups that welcomed us, and for their honesty, hospitality and willingness to speak to us.

We began by asking carers to share words they associate with their caring role:

exhausting demanding isolated stressful tiring

We then asked carers a series of questions about the training and education they most valued. We have summarised these below, as well as the action points for ourselves based on these responses, and our policy team’s recommendations.

Information about dementia

No one offered information until it was too late. It would have been useful earlier on”

Timely, detailed information about dementia was considered hugely important by every group we visited: this included how the disease may progress, the different types of dementia and information for the whole family including children/ grandchildren.

Action points

• We currently offer Dementia Awareness workshops but we will review the current course content to ensure this includes the kind of information carers have identified as being useful. We will also consider further development of intergenerational resources.

Dementia and communication, mood, behaviour and wellbeing

How to cope with mood changes and strategies –didn’t expect these and wasn’t prepared for these”

Knowledge about dementia and the breadth of behavioural changes including communication, mood and wellbeing was raised by every group we visited, with carers seeking information on how to understand and cope with behavioural and mood changes.

Action points

• We currently offer workshops on Dementia and Communication and Dementia and Mood and Wellbeing. We will review the content of these workshops to see how they can be adapted to cover the areas carers mentioned.

• Some of the topics mentioned may be better covered by outside speakers. We are going to explore offering a programme of speakers next year via recorded webinars.

Knowledge about local peer networks and other dementia support

“Biggest help we got was joining this group – there was nothing else, no other help out there and this is a great support”

The huge importance of peer support was acknowledged by every group we visited, but not everyone found it straightforward or easy to find out about support in their area.

Action points

• Ensure information about local and national support and how to find out about this is covered in our workshops, with local contacts where appropriate.

• We are currently reviewing what information the Age Scotland helpline holds about local groups and whether this is something we need to update.

Looking after yourself as a carer

Coping mechanisms, very hard to cope when they (the person living with dementia) change so quickly”

Carers wanted information on how to look after their own physical and mental health whilst balancing their caring role; how to access support, and how to cope with changing circumstances, such as a move into residential care.

Action points

• Some aspects of carer wellbeing may be offered by local carers centres either as part of groups or where counselling may be offered. We currently signpost to carers centres in our workshops, and will continue to do so.

• As a team, Dementia Training are looking into whether we could host webinars on the topic of carer wellbeing.

• We acknowledge however the link between effective, timely support for carers and improved health and wellbeing – which feeds into the policy points (see below).

Carers rights such as the Carers (Scotland) Act and Self-directed Support (SDS)

Many carers felt unaware of their rights as carers and felt that this lack of knowledge impacted on the support they were getting.

Action points

• We already offer a range of workshops around carers rights so will aim to ensure carers groups and carers centres are aware that we can offer these, both online and face to face.

• We are also planning to develop a workshop ‘New to caring for someone with dementia’ so that people who are starting out in a caring role can develop their knowledge.

“I didn’t know what my rights were but knowing your rights – knowledge is power”

Policy Recommendations

Based on the engagement with carers of people living with dementia, a number of policy recommendations are put forward within the report. The top five recommendations for the Scottish Government are:

1 2 3 4 5

Ring fence Carers Act funding to ensure allocated funds are used for the intended purpose

Fundamentally reform the way social care is delivered and funded not wholly reliant on the National Care Service

Commit to review the implementation of adult carer support plans and implement actions to increase awareness and uptake

Improve social security support for older unpaid carers by addressing the overlapping benefit rule between State Pension and Carers Support Payment

Lead a coordinated approach to change the narrative of dementia as a critical condition which deserves appropriate, equitable and sustainable funding in line with other incurable conditions

To take forward these recommendations, our policy team will:

Write to MSPs outlining the key issues raised from this engagement and our key asks

Research into the use of Adult Carer Support Plans and use these findings as a tool for influencing national and local government

Use our position to influence the development of the National Care Service

Start work early to ensure that dementia, including support for unpaid carers, is prioritised in parties’ manifestos for the 2026 Scottish Parliament Elections

“We had to wait for the link worker because he was very busy, so before we got support from the local link worker it would have been helpful to have a checklist – you’ve got this diagnosis and life is going to be different – where do you get help – who do you speak to first.”

Our conversations with carers covered many other topics, such as care homes, hospital admissions and discharge, finances and benefits, and end of life care. We have also made a broad range of policy recommendations, based on the feedback from carers about what is important to them. For a fuller report, associated action points and detailed policy asks, please see our longer engagement report at www.age.scot/dementia.

We would also love to hear from you if you have any further comments or thoughts – please get in touch with us at dementiatraining@agescotland.org.uk.

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All quotes are from carers at engagement events.

To find out more about what we do: www.agescotland.org.uk

Contact us at: dementiatraining@agescotland.org.uk

Tweet us: @AgeScotDementia

Age Scotland is the national charity for older people. We work to improve the lives of everyone over the age of 50 and promote their rights and interests. Our vision is a Scotland which is the best place in the world to grow older.

Contact us: Head office 0333 323 2400

Age Scotland helpline 0800 12 44 222

e: info@agescotland.org.uk www.agescotland.org.uk

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