Trent Dementia developed the Life with Dementia project to empower people living with dementia to lead their own projects and events. On occasion family members would get in touch to raise concerns about the capacity of their loved one to engage with the project. Family members of course, often have a much different experience of their loved one who may feel more or less able to voice their concerns in a group. We also encountered challenges from professionals who made some assumptions about what an individual may or may not be able to do, often without meeting them. Dementia is a multi-faceted experience with a huge range of individual experiences – not all related to memory as is often assumed. Here, Ghazal reflects on the challenge of ensuring family members are informed about our approach and how we worked to support the sharing of information, if people we worked with wished to do this.
– Dr Jane Rowley – Project Manager
During the second phase of our Life with Dementia project we worked with people living with dementia around empowerment. Raising the awareness of the family member and supporters of the people living with dementia of the nature of our Empowerment project and what we are trying to do in relation to empowering people living with dementia was also important for some people. Sometimes in the course of peer support, inadvertently the family members can feel ignored and left in the dark which in turn may lead to resistance towards giving more responsibility and the leadership role offered to people living with dementia during the course of our work.
We spoke with members of our core advisory group who suggested that they could choose to give consent to involve family members and supporters by sharing the minutes and summary to them after consent was given by the advisors in our core group. Our DEEP Hub Newsletter is also helpful in raising awareness about activities that other DEEP peer support groups are involved in and how much people living with dementia can accomplish if they are supported to take risks. In some DEEP Peer support groups, for example in Friends for Life: Ay-Up Me Duck group, the group starts at 10 am for helpers, the group then meets 10:25 to 12:30 every third Thursday of the month. This offers the helpers to spend time with people living with dementia before leaving them to converse with their peers.
Inviting people living with dementia to participate and plan for an event led by people living with dementia, such as Life with Dementia: What Matters to Us in 2018 and Life with Dementia: The Big Conversations in 2019, where people living with dementia plan an event to share their experiences, achievements, and challenges with professionals and family members can positively influence family members, like Cynthia (Litchfield, 2019), too. She said that felt a little apprehensive at first, but then warmed up to the idea as she saw that her beloved Steve regained some confidence back through these planning meetings. If family members and supporters of people living with dementia could perhaps participate in the beginning 20 minutes of the planning meetings and DEEP peer support group’s meetings, they can see the positive changes in their loved ones which might lead to more collaboration in supporting their loved ones to take control of their environment and to participate as facilitators of positive and empowering change.
In our Life with Dementia project, some of the advisors sometimes expressed their feelings towards the challenges faced by people living with dementia to voice their needs and feelings when in a mixed meeting, the voice of carers is louder and they felt silenced sometimes. The family members seem to become too protective of their loved ones so that they reduce the chance of going out and taking part in physical and social activities which might even sometimes lead to isolation and decrease in quality of life.
According to Alzheimer’s Society’s (2019) report, six in ten people living with dementia said that they experienced loneliness and isolation. The Alzheimer’s Society (2019) predicts that over the next 20 years the number of people with dementia who experience isolation would reach 240,000. As World Alzheimer Report (Alzheimer’s Disease International, 2019) said about attitudes to dementia, some people living with dementia reported that friends, siblings, and family members sometimes tend to visit less often and avoid visits and talking with people living with dementia due to different factors, for example, because of sudden mood changes, or because the person with dementia might sometimes forget their names or repeats questions or sentences. They sometimes just cannot cope with the different “Me” in people living with dementia. These results are in line with our Project Manager’s research study in the preplanning phase of the project (Rowley, 2018). She sought the views of people living with dementia about what was important to them and they expressed that they would like to talk to their peers with similar experiences and share what they found to be useful.
We found that, of course, the first and more straightforward solution to the problem of isolation in people living with dementia is to encourage forming of Dementia peer support groups. If our friends and family members avoid us or do not see our needs, we will go and find our own group who share similar experience. Finding solution for loneliness is of priority, because even financially, as Wang and colleagues (2019) found out in their study, loneliness was significant risk factor for health and social care service use independent of participants’ health conditions in people aged 80 years or older. The study suggests there is a need for prioritising awareness-raising and prevention of loneliness for public health policy and practice.
Gradually, however, as awareness of how to support people living with dementia rises in society and in families by reading publications, such as newsletters and social media like Twitter, by participating in Dementia Friends’ sessions, by attending the first twenty minutes of DEEP peer support groups’ sessions, by attending events like Life with Dementia in 2018 and 2019 where people living with dementia are in the driving seat of the planning and presenting, more collaboration between organisations and family members can be instigated to enhance the empowerment of people living with dementia and better their quality of life in society and in the family environment and among their friends, which ultimately leads to less isolation and loneliness.
As de Gruchy (2016) says from a carer’s perspective, “caring is also about allowing and managing a certain level of risk in order to maximize a loved one’s freedom and independence.” Some of our advisors in our Core Advisory Group suggested specifically inviting family members of people living with dementia to events and peer support meetings where they could see and hear directly from people living with dementia about their challenges and their journey of empowerment. This, they thought, would positively influence their attitude towards their loved one living with dementia.
In addition to collaboration between people living with dementia and their family members, it means we also need more collaboration between services working for carers and those for people living with dementia. This does not mean that these services cannot have their own remit, rather it means that if the goal is to empower people living with dementia and increase their quality of life, then we need to have their family members, carers and supporters on board. Dementia Services whether from NHS and charities need to know that they belong to one cause: Increasing the quality of life for people living with dementia. So, although they are independent, they are also inter-dependent on each other and need to be aware of each other’s activities, services, experience, and achievements. This knowledge needs to lead to more collaboration and support for each other.
Alzheimer’s Disease International. (2019). World Alzheimer report 2019: Attitudes to dementia [PDF file]. Alzheimer’s Disease International: London. Retrieved January 23, 2020, from https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf
Alzheimer’s Society. (15 May 2019). A lonely future: 120,000 people with dementia living alone, set to double in the next 20 years. Retrieved from https://www.alzheimers.org.uk/news/2019-05-15/lonely-future-120000-people-dementia-living-alone-set-double-next-20-years
de Gruchy, A. (19 May 2016). Loneliness, dementia and living the life we want. Improving dementia education and awareness (IDEA): Dementia day to day. Retrieved from https://idea.nottingham.ac.uk/blogs/posts/loneliness-dementia-and-living-life-we-want
Litchfield, C. (2019). Getting a little bit of my Steve back. Trent Dementia Blog. Retrieved from https://www.trentdementia.org.uk/blog/getting-a-little-bit-of-my-steve-back/
Rowley, J. (2018). Project report [PDF file]. Retrieved from https://www.trentdementia.org.uk/wp-content/uploads/2019/02/Life-with-Dementia-project-Summary-Project-Report-for-WEBSITE_-002-22.02.2019.pdf
Wang, H., Zhao, E., Fleming, J., Dening, T., Khaw, K. T., Brayne, C., & CC75C study collaboration (2019). Is loneliness associated with increased health and social care utilisation in the oldest old? Findings from a population-based longitudinal study. BMJ open, 9(5), e024645. doi:10.1136/bmjopen-2018-024645