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Living With Semantic Dementia: A Case Study of One Family's Experience.
Easy Access Summary
This paper explores what it is like to live and communicate with someone who has semantic dementia. Semantic dementia is a relatively rare form of progressive brain disease which affects a person’s ability to understand the world around them. It shows itself gradually as a person finds that they are having more and more difficulty understanding what is said to them and more and more difficulty finding their own words to reply. The person who has this kind of dementia does not forget where they are or what has happened to them (unlike others who have Alzheimer’s dementia for example).
In this study, the wife and son of the person with dementia talked about how they have adapted their lives since their father/husband had been ill and how they have changed the way they talk and interact with him. Both indicated that living with someone who had this illness placed everyone in the family under stress as they worked out how to live with a person who did not behave as they did before. The family found that they watched carefully what their father/husband did as they were constantly worried for his safety. Both the wife and son found that it was very hard to talk and to connect with him as the number of topics he could talk about became more and more reduced.
There were four ways in which the family adapted: the first was to find and keep to a routine; the second was to keep a close eye on what the husband/father wanted to do and try and shape this so as to keep him safe, the third was to keep talking with him about the things he was showing an interest in and finally to be prepared to alter and change what they talked about and what they did so as to keep down the distress that not understanding caused him. Both the wife and son found this physically and emotionally challenging.
A speech and language therapist will want to explore with all the family members of someone with semantic dementia, the effect that this diagnosis is having on their lives. In particular, the therapist may want to look at how to enable/maintain conversations and interactions which are both useful and pleasant for each family member. To do this, the therapist will want to talk, observe and plan with the client and family members about how they might approach keeping engaged in routines, communicative interactions and interests. The therapist will also want to liaise with the multi-disciplinary team to ensure the client is safe and able to maintain safety and to provide timely support.
The therapist will want to refer to RCSLT guidelines on managing people with a progressive condition and specifically people and their families where one person has dementia. In the case of semantic dementia, the therapist is likely to be the person who is most familiar with the concept of semantics and its deterioration and should act as a broker between the staff and family to help all involved understand what the diagnosis means. As the disease progresses, the therapist will want to adapt advice and strategies to help.
Semantic dementia is a variant of frontotemporal dementia and is a recently recognized diagnostic condition. There has been some research quantitatively examining care partner stress and burden in frontotemporal dementia. There are, however, few studies exploring the subjective experiences of family members caring for those with frontotemporal dementia. Increased knowledge of such experiences would allow service providers to tailor intervention, support, and information better. We used a case study design, with thematic narrative analysis applied to interview data, to describe the experiences of a wife and son caring for a husband/father with semantic dementia. Using this approach, we identified four themes: (a) living with routines, (b) policing and protecting, (c) making connections, and (d) being adaptive and flexible. Each of these themes were shared and extended, with the importance of routines in everyday life highlighted. The implications for policy, practice, and research are discussed.