Dementia Carer Voices
Dementia Carer Voices, managed by the ALLIANCE, is a Scottish Government funded project which harnesses the work of Tommy Whitelaw and recognises the importance of the carer voice, in informing future service provision and in empowering carers themselves.
In June 2011, as part of his ‘Tommy on Tour’ campaign, Tommy Whitelaw, a carer for his late Mum Joan, walked around Scotland’s towns and cities to raise awareness of the impact of dementia on families and the difficult but vital role played by carers. Since then, he has engaged with thousands of carers through twitter, his blog and frequent talks to health and social care professionals and carers organisations across Scotland.
He has collected hundreds of life stories from people which detail their experiences of caring for a loved one living with dementia.
The letters demonstrate that carers of people with dementia often feel isolated and that there is insufficient recognition of the range of complex issues about which they are expected to have understanding, from legal to financial, to health and housing, as well as, cope with the distressing, social and emotional demands of caring.
As Project Engagement Lead with Dementia Carer Voices, Tommy continues to collect letters and stories and build on that work. The project aims to –
§ Capture the experiences of carers across Scotland with a view to informing future policy and service provision;
§ Empower carers by providing information based on the Charter of Rights* and Carer Strategy about caring for someone with dementia;
§ Highlight the role of carers as natural resources; carers as people with needs;
§ Work with other carer organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users.
§ Establish a greater understanding of dementia and the carer journey among health and social care professionals;
§ Highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and enabling carers to ask for additional help when it is needed;
§ Reduce isolation of carers of people with dementia;
§ Increase awareness of carer rights;
§ Gather information supporting family and person centred approaches to health and social care.
The project will achieve this through visits and talks by the Project Engagement Lead Tommy Whitelaw to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media; and films to raise awareness/understanding. A Dementia Carer Voices survey is presently in operation via the ALLIANCE website to collect key carer information which will be captured and published to raise further awareness of issues of importance to carers.
*Charter of Rights for People with Dementia and their Carers, based on the PANEL approach
People with dementia and their carers at every stage of the illness and wherever they are, have the right to:
Emerging Key Messages
“No one ever asked”
One of the most frequent concerns expressed by carers is that staff delivering care can sometimes “forget” the person inside the dementia. In order to deliver real person-centred care, it is imperative that staff know as much as possible about the lives, personalities, likes and dislikes of the people for whom they care. This enables staff to give care and treatment which meets their needs, and can therefore maximise quality of life. Recording life history information and understanding how a person lived before they developed dementia helps staff to appreciate how the person’s past affects their present life and behaviour, individualise the care of the person and help maintain their identity.
“I look at them [people with dementia] and think I wonder what she did in the past. If we knew it might make some of us feel a little bit ashamed.” Nurse
“Many people simply saw my Mum as a wee woman with dementia and used that as their starting point, denying her the life she had led and could have continued to lead for as long as possible.” Tommy Whitelaw
No consistency of care staff, need for sense of routine
It is widely accepted that familiarity and routine can assist in managing the symptoms of dementia, but a lack of continuity in staffing is still cited as a huge frustration by many carers who have witnessed inconsistent approaches in their loved one’s care and a lack of understanding of their needs.
Too often carers experience inconsistency in staffing which does not allow for a person centred-approach to care. While extreme examples have made the headlines, frequently carers speak of having to repeat information to new staff on a regular basis.
“While I recognise the need for holiday cover, how many carers through the door is too many?” Carer
“There is a shortage of staff – people are brought in who don’t know the conditions of the service users they are caring for.” Care home staff member
Having a friend or ‘buddy’ who is going through (or has gone through) the same experience “A helping hand along the way”
Caring for someone with dementia can be stressful because of the complex, unpredictable and progressive nature of the illness. This can have a profound social, emotional and physical impact on carers including an increased risk of stress related conditions, such as depression. Everyone affected by dementia has a unique story to tell and carers, by sharing their experiences can help to tackle the misunderstandings surrounding dementia and offer hope and advice to people in the same situation. Many carers have indicated an interest in obtaining training and support to better understand the condition and ways to cope with the difficult and challenging behaviour of their loved one.
“It’s an emotional roller coaster which unless you have experienced, it defies description.” Carer.
Difficulty in becoming aware of/ accessing services
Many carers talk about what they think would have been helpful or useful to know (or have access to) but that they only found out about much further into the condition and highlighted the immediate period post – diagnosis as being a crucial time for them. Some key comments raised included the need to have a very basic factsheet which signposts local and relevant support, and a step by step approach to resources for use post-diagnosis. Letters also highlighted the importance of the timing of support and intervention, as people are unique with different needs, and understanding of the condition and how it may affect them and their family.
Finding out about/accessing services was described as:
“like trying to crack a secret code,”
“like trying to break MI5,”
“I now know that help is there but you have to know where to look, no one comes to you with information or instructions.” Carer
Greater recognition of the carer role amongst health and social care professionals
While we recognise the progress being by the Scottish Government through the “Promoting Excellence” framework, many carers still feel that their views and needs are overlooked by health and social care professionals and that their right to support the person they care for as full partners in the provision of care is not well recognised. Some carers highlighted positive examples of being involved during a hospital stay e.g. helping with meals or personal care, but it would appear that the approach to this varies from ward to ward, and hospital to hospital. Carers can provide vital information and support during hospital admission or investigation which can be very disorienting for someone with dementia. Involving Carers who wish it, in the day to day care and treatment of their loved one benefits both the person with dementia and the staff involved. The ALLIANCE believes that such partnership should routinely be the norm. In this regard, the ALLIANCE welcomes the Scottish Government’s pilot of more flexible visiting hours in Scottish hospitals, which will allow those living with dementia to benefit from a familiar face to assist and to allay fears of being in an unfamiliar environment, and looks forward to it being rolled out at the earliest opportunity.
“As a carer it was recognised by professionals that my Mum would eat better and cooperate more with interventions if I was there to explain and assist. The fact is she trusted me.” Carer.
“Especially in (the) care of person with challenging behaviour who had terrible night terrors, it was helpful to have his daughter come in and settle him. Avoided need for any sedation.” Mental Welfare Commission.
Grief that never goes away
Carers’ letters indicate that the hardest part of their journey is not the practical challenge which they face on a daily basis, but rather the emotional impact of physically seeing their loved one in front of them but only getting occasional and increasingly rare glimpses of the mum and dad, husband or wife that they used to be. It is for this reason, that grief has been described as the “constant yet hidden companion” of dementia both for people with dementia and their families.
“The most difficult part is seeing them slip away, bit by bit.” Carer
“The saddest, longest, goodbye.” Carer
This is but one of the unique challenges posed by dementia which often even friends and family don’t understand and thereby adds to the sense of isolation and hopelessness that many carers already feel.
Across each of these areas the ALLIANCE recognises that there are pockets of good practice supported by a range of Carer Organisations. Despite this, individual carers can often feel lost and isolated and spreading good practice across particularly vulnerable and “hard to reach” groups is especially important.
Dementia Carer Voices will link with policy makers, practitioners and carers to raise awareness and contribute to building communities where carers of people with dementia are better informed, supported, respected and empowered.
The ALLIANCE is the national third sector intermediary for a range of health and social care organisations. The ALLIANCE has nearly 400 members including large, national support providers as well as small, local volunteer-led groups and people who are disabled, living with long term conditions or providing unpaid care. Many NHS Boards are associate members and many health and social care professionals are Professional Associates. Commercial organisations may also become Corporate Associates.
The ALLIANCE’s vision is for a Scotland where people of all ages who are disabled or living with long term conditions, and unpaid carers, have a strong voice and enjoy their right to live well, as equal and active citizens, free from discrimination, with support and services that put them at the centre.
If you would like to discuss any of the topics raised within this booklet or to request any further information, please contact our project team.
Project Engagement Lead
Policy and Information Assistant
TEL: 0141 404 0231
Or visit www.alliance-scotland.org.uk/dementia-carer-voices-resources-pageto view and reflect on the projects’ films, sign up to receive newsletter updates and access the Dementia Carer Voices survey.