Celebrating advocacy
This week we welcome the opportunity to celebrate all those individuals who use their advocacy skills to support, empower and amplify the voices of the many people across the age continuum. Indeed, here at the BJF we are celebrating 25 years of providing dementia advocacy to local people over the age of 50; helping to support their needs and wants in a range of different contexts. Whether it be around where a person chooses to live; how to ascertain funding support; or how to navigate complex family situations, our trained advocates continue to provide 1:1 support. We also organise a monthly dementia peer support forum, facilitating individuals with dementia to navigate their day to day lives by supporting each other.
A diagnosis of dementia can affect the whole family, and the associated losses and changes are immeasurable as the dementia impacts on the individual, family and friends. At the BJF, we are proud to support people with dementia, and have a small team of advocates that remain passionate about their role and skills.
The Beth Johnson Foundation Dementia Advocacy Service provide advocacy to people over the age of 50 who are living with dementia or who are being assessed and awaiting confirmation of a dementia diagnosis. We are a highly experienced service that has been providing this service for 25 years in the North Staffordshire and Stoke on Trent area. We provide free, one to one non statutory advocacy to ensure people’s views and opinions are heard. Advocacy means listening to and understanding the person and their situation. It is an independent and confidential service, and the advocate will always represent the person with dementia. An advocate will never influence or make decisions for the person. The Dementia Advocacy Service supports people with the issues that matter to them.
Our Dementia Advocacy Peer Support group
DAPS offers people aged 50+ a chance to share their experience of living with dementia, in a supportive and non-judgemental environment. It is a group solely for people living with dementia who can attend independently without their family, friends or carers. Members meet once a month and can talk freely about what helps or hinders them in everyday life living with dementia. They also act as a consultation group, and conduct small paid, research projects; they have regular visits from Keele University Medical Students to explore their perceptions of living with a dementia diagnosis.
Members of the Dementia Advocacy Team also attend the DAPS group to provide additional support during the monthly meetings. Sometimes, people can bring up issues within the group that identify an advocacy need and is addressed accordingly.
The focus of the group is peer support so that members can listen and respond to each other’s lived experiences in a very supportive way. Quite often, people will talk about how their loved ones find it difficult to accept their dementia diagnosis and so do not understand what living with dementia means for them. By giving people this time and space, they can express their feelings openly. People know that their peers will be patient and accepting when they share their low moments and also their moments of joy with the group. For people who attend the Peer Support Group, they feel ‘understood’. It is a very positive and rewarding experience for them
“I’m very grateful for everything the family do – they are very supportive, and I know they want what is best for me. It’s just that sometimes what they think is best and what I think is best don’t match up and it’s hard for me to tell them that. It’s a relief to know that you are here for me, on my side, and I know that you think what I want really matters." "I didn’t really know what an advocate could do for me until Jackie came to see me. I was very worried about setting up my LPA’s and couldn’t see that it would do any good for me - but she talked me through all the information in a way that made sense and I suddenly understood why it was important. She also helped me with finding the right person to set it all up for me – I’d had quotes before that were hundreds of pounds so she saved me a lot of money too!" "I’ve had such a lot of support from the people here (the DAPSG members). The family don’t accept that I have dementia, they say it’s just my age and that makes it very hard for me to talk to them. I know the people here understand.”
We pride ourselves on the specialist dementia advocacy service we provide, incorporating person centred approaches and having a good combined knowledge and skills of both dementia and advocacy. Examples where the BJF Dementia Advocacy Service are able to support people living with dementia and do not meet the criteria under Statutory Advocacy Under Mental Capacity Act 2005:
Inadequate housing: BJF have advocated successfully for people to move into better living accommodation and retirement villages.
Housing Repairs: Advocates have provided support for people to make an official complaint using online complaints systems.
Finding information: People often do not know what they are entitled to or where to go for support. Advocates can sign post and also attend appointments and write down the advice and help with forms.
Medical Appointments: People often forget the information a GP or medical practitioner give to them. We can attend appointments and record this information for the person.
Support with phone calls or IT communications: E.G. benefit reviews, conflict with fuel companies (not paying what is owed to the person or allowing them to cancel DD) Some people with dementia can loose IT skills and cannot remember or understand complex information on telephone calls. Without Advocacy support this can lead to many problems including debt. It creates a great deal of distress for the person.
Managing personal administration: Advocates have helped to put systems together for people who have lost control of what is happening with their post, bills etc.
Lasting Power of Attorney: We have helped to explain what Lasting Power of Attorney means, how they work and possible benefits. We have sign posted to lower cost solicitors and can provide guidance on how a person can do this themselves on the internet.
Pressure from Families: Advocates have supported people to voice when they want domiciliary care in the home. Sometimes families think it is best for the person to move into extra care facilities or care homes. Having an advocate who accepts the persons point of view and supports them when meeting with social care professionals can be very empowering.
Non instructed advocacy: A person with very advanced dementia and is tube fed had a SALT assessment that stated that she could have some food fed to her. The Care manager of the nursing home overruled this without sufficient medical grounds. The advocate is liaising with GP, SALT, family, care staff to see if this would improve her quality of life safely and advocate for accordingly.
Care Act Assessment: Advocates have challenged assumptions social care professionals have made. For example, a social worker assumed a person’s dementia condition had declined because they had become less responsive in conversations during the assessment. However, the person’s hearing aids were not working.
The person was assessed as having a severely reduced appetite. In fact, the person had a good appetite but was not given clear simple choices. The advocate was aware that the person needed to be shown a couple of food choices and witnessed a carer asking “what do you want to eat”. The advocate was able to ask the social worker to put into the care plan that the person must be given a couple of options at meal times and to be shown these options.
The person also was unable to engage with the assessment as there were too many family members and carers present. There were multiple conversations going on. The social care professionals again assumed that the person’s dementia condition had progressed due to their lack of engagement. The advocate knew the person needed a quiet environment and a one-to-one conversation and then the person was able to fully engage with the assessment. This allowed a clearer understanding of the person and that they were quite able to remain in the home that they loved with the support of carers.
BJF advocates have a good understanding of the differing impact different dementia conditions have upon people. For example, a person living with Parkinson Dementia communicated that her sister visited her in her home often. Her sister had died many years before.
This could have been interpreted as the person missing her sister, or in fact forgetting that her sister had died.
The advocate was able to explore the reason why this person was mentioning the visits by her sister and it was established that the person was experiencing hallucinations.
BJF have the time and patience to engage with people living with dementia and learn how to communicate with them.
Advocates become are more sensitive to a person’s use of different words, facial expressions and mannerisms. One example is a person who forgets what he is saying mid sentence and he states that he is communicating very poorly. The advocate knows that simply repeating his last sentence will prompt him to continue with his conversation and paraphrasing what he has been talking about demonstrates he is very coherent in his conversation. Advocates also use picture cards to support and promote communication and enhance meaningful engagement.
Our expertise in dementia advocacy is also reflected in our collaboration with Methodist Housing and Father Hudson’s Care, as part of the Even Better Together project. The BJF element of this project is to develop, deliver and evaluate an introductory training programme for all three organisations around dementia advocacy. Establishing and ensuring a shared understanding of dementia and advocacy; promoting a consistency of dementia support across all services, so that local individuals can have a voice in their lives.
Patsy Corcoran, Volunteer Development Manager, is an experienced advocate and has written a poem that well describes the importance of advocacy and its potential impact.
We are fiercely proud of our dementia advocacy support and are excited about our future in supporting this important work.
Sue Read,
CEO, the Beth Johnson Foundation
