Caregivers' experiences of advanced dementia
Caring for a person with advanced dementia can evoke many different and powerful emotions. For example, it can feel unrewarding and upsetting to look after people who, for all intents and purposes, appear to live in another world. Unfortunately, for now there is no recovery from dementia and as such it becomes the job of caregivers – whether as care staff or family carers – to provide everything that the person with advanced dementia requires. These needs are far-reaching, from help with eating, to washing and dressing, to supporting the person with meaningful activity. The role is challenging and can often lead both family and professional caregivers to become ‘burnt out’ (Zientz et al 2007).
I enjoy my job but it can be very stressful.Care worker
In this feature, we look at the challenges – and in particular the challenges posed by communication difficulties – for family members and care staff who are involved in supporting a person with advanced dementia.
How dementia affects communication
People with dementia experience increasing difficulties with communication due to progressive memory problems. This arises as deterioration in working memory (the memory function that keeps information available to us and allows us to manipulate it and use it in our thinking) impairs the ability to keep hold of and use information during conversation.
As a result, the conversation of people with dementia may often seem repetitive and difficult to follow. Social situations become increasingly difficult for people with dementia as they forget names, recently discussed topics and even words or the meaning of particular words.
Memory problems may mean that the person with dementia typically requires a great deal of prompting and reassurance. A person may need to be reminded of where they are, what day it is, what time it is and what they were just doing and so on. The constant need for reminding, monitoring and reassurance undoubtedly weighs heavily both on people with dementia, as well as care staff and family carers.
In turn, family carers and care staff are faced with the challenge of making themselves understood in the face of their own decreasing ability to understand the person with advanced dementia. In short, the mutual struggle to understand and be understood may be the most frustrating and upsetting impact of dementia for both people with a diagnosis and their caregivers (Azuma & Bayles 1997).
It’s worth adding that communication problems are not solely due to the impact of dementia on the communication of people with dementia. Interpersonal factors (such as lifelong habits of poor listening between a couple) have a big influence on communication. Environmental factors do too – consider for example the effect of a loud television being on for large amounts of time in a care home lounge.
The challenges for family carers
The role of the main family caregiver of a person with dementia typically falls to an adult child or a partner. For family members, communication difficulties at all stages of the illness – but particularly in the later stages – put a major strain on maintaining relationships with the person with dementia and on relationships across the wider family unit.
The Healthtalkonline website contains many interviews with carers of people with dementia, and here a man talks about his wife’s loss of verbal communication in advanced dementia:
‘Other forms of communication, verbal communication, have virtually gone. She can say words but they’re not put together to make any sense. So it’s virtually impossible to verbally communicate.’
The complexity and demands of the physical care of a person with advanced dementia can also be extremely stressful for family carers, but particularly if the person is still living at home. Some acts of physical care – such as help with going to the toilet and washing – may cause tremendous sadness and at times embarrassment for family carers. Some tasks may place a considerable physical strain on the carer, as this person recalls:
‘I got no help with showering him even though I asked his doctor. He had TIAs [transient ischaemic attacks] – when he would fall I would cover him up, wait for him to recover and edge him to a chair and then use a pole between my feet to lever him off the floor.’ (Newbronner et al 2013)
Care arrangements may change often and involve a large number of care staff coming and going from the family home. The carer will have a demanding role overseeing these arrangements, and will have to communicate regularly with a large number of people in the health and social care system. Again, on the Healthtalkonline website, one carer describes interacting with social services in order to arrange day care for her husband with dementia in this way: ‘It’s all been a desperate fight and required huge energy.’
Spending so much time caring for a loved one with advanced dementia can make the carer feel extremely cut off from the outside world. This can lead to feelings of resentment towards the person they care for, which in turn can evoke feelings of guilt and shame – all of which compounds the already-substantial difficulties of communicating with the person with dementia.
There is also a danger that carers become ill themselves as a result of this demanding job. Depression and ill health are common among caregivers due to the stressful and all-encompassing nature of their role. As such it is essential that family carers take regular breaks, see friends and family, and maintain their hobbies and interests as much they we can.
For more on this, see the section on ‘Working in partnership with carers’.
The challenges for care staff
The communication difficulties experienced by people with advanced dementia have a huge impact on care staff. If the staff member feels they have failed to reach the person, this may make them feel inadequate and helpless.
The job of care staff is an extremely challenging one that involves many practical tasks, and time constraints may seem to push communicating with the people they care for down their list of priorities. Quite often, it can take a very long time to establish what it is that a person with advanced dementia is trying to say. The person may need a lot of consistent one-to-one support, and yet this sort of time and staff input may be difficult to offer reliably.
Often, care staff are first getting to know the person with advanced dementia at the very time when that person’s communication skills are already severely affected by the dementia. If the person doesn’t have any family or friends close by, this is even more difficult, as it makes it all the more difficult to establish an understanding of the person’s life history, interests and personality.
A care worker’s expectations may also come into play when it comes to communication. If a care worker doesn’t expect a person with advanced dementia to be able to communicate, they may be less likely to attempt some sort of interaction.
For all these reasons, care staff may find that communication and social interactions reduce or even stop altogether except during basic activities of daily living such as mealtimes and showering. This situation is clearly unhelpful and unsatisfying for both people with dementia and those who care for them (Ellis and Astell 2011).
There are things that care staff can do to address these challenges in communication – and we look at these more in the feature on ‘Communication in advanced dementia’.
The following case study describes an attempt by Connie, a person with advanced dementia who lives in a care home, to engage others in conversation. The conversation was recorded by an observer who is standing at the edge of the room.
Connie is walking along the corridor and says something when she walks past another resident. The resident does not respond.
Connie walks into the lounge and sits down on the seat closest to the door. She sits beside another resident. The other resident looks at Jessie and then says to the person who is observing and recording the situation, ‘Who’s getting there?’
Connie sits and stares into space. People are talking all around her but not to her. She says, ‘Smart. Very smart.’
The woman sitting next to her points and says, ‘There’s a seat there.’
Connie sits up, looks to where she’s pointing and says, ‘Yes, they’re very good. In between the letee and the… I can’t think. I’ll get to it though.’
The other woman says, ‘There’s a seat over there.’ ‘Aye’ says Connie. ‘They’re flaxom when you come in.’
The other woman looks away and Connie continues to speak. ‘Mine’s is just in the middle.’ [pause] ‘Very good!’ ‘Oh, yeah.’
Connie is staring again. ‘They’ve got more, they’ve got more work done in the last ten minutes.’
Another lady walks into the room and talks to someone on the way past. Connie thinks she is talking to her and replies in a way that is unclear.
The same woman is walking back across the room to leave. As she walks past Connie, Connie says, ‘That’s great. Great! That’s marvellous! Is there more than one? Oh, that’d be great! Lovely! Marvellous!’
The woman has left the room before Connie has finished talking. Connie looks away and stares into the room. ‘That’s great!’ Pause, ‘Makes me any better. It does. Great.’ She gives a thumbs-up and nods her head.
After reading this passage, you can see that Connie does have a clear urge to communicate – but because her speech is confused it is difficult for others to respond and pick up the conversation. Because of this, she is often ignored by other people.
Often one of the most stressful elements of caring for a person with advanced dementia arises from our mutual attempts to communicate in a way that is understandable to both of us. In this sense those offering care become detectives, constantly looking for clues as to what the person needs or wants or how they are feeling.
It is understandable that people feel separate from individuals who seem to be unaware of their surroundings and the people in it. However, if we can find a way to reach the people we care for, this can not only makes their lives so much better – our experience of caring can vastly improve too. Through achieving some sort of meaningful interaction we can feel as though we are doing something significant both for us and for those we care for. The next feature on ‘Communication in advanced dementia’ looks at how we can connect with people with advanced dementia.
Access and download additional resources
Further reading Open
Azuma, T. and Bayles, J.A. (1997) ‘Memory impairments underlying language difficulties in pAD’, Topics in Language Disorders, vol 18, pp 58–71.
Ellis, M.P. and Astell, A.J. (2011) ‘Adaptive Interaction: a new approach to communication’, Journal of Dementia Care, vol 19, no 3, pp 24–26.
Healthtalkonline website: This website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including arranging residential care and becoming a resident. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
Newbronner, L., Chamberlain, R. Borthwick, R., Baxter, M. and Glendinning, C. (2013) A road less rocky: Supporting carers of people with dementia. London: Carers Trust.
Zientz, J., Rackley, A., Chapman, S.B., Hopper, T., Mahendra, N., Kim, E.S. and Clearly, S. (2007) ‘Evidence-based practice recommendations for dementia: Educating caregivers on Alzheimer’s disease and training communication strategies’, Journal of Medical Speech-Language Pathology, vol 15, pp Iiii–Ixiv.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to supporting a person with advanced dementia, such as The later stages of dementia(417) and The progression of Alzheimer's disease and other dementias(458)
The healthtalk website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including one section on ‘Deterioration: severe dementia’, which includes six carers each describing their experience of supporting their loved one in advanced dementia.
Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which it promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.
Oxleas Advanced Dementia Service: Supporting carers and building resilience
This 2013 resource from The King’s Fund describes how health and social care services in one local area are working together to support people living with advanced dementia in the community.
Supporting people in the advanced stages of dementia
This 2013 workbook from Skills for Care is intended to guide managers in what sorts of knowledge and skills care staff need when supporting people living with advanced dementia. The resource covers a wide range of topics, such as the importance of activity, moving away from a task-based care culture, reminiscence and reflective learning, and includes case studies, top tips and links to supporting resources.
Related pages from this section Open