Five main themes were identified to depict key aspects of understanding the experiences and needs of spousal carers of people with FTD. Main themes included: (i) The “Constant Battle” – A journey toward an FTD diagnosis, (ii) Shock, Relief and Fear – Challenges persist post diagnosis, (iii) The “Life Altering” impact – The loss of the spousal relationship and shifting roles, (iv) Adapting, managing symptoms and receiving support, (v) Lack of general knowledge- Barriers to support for spousal carers of FTD. See Table 2 for the representation of themes across.
The “Constant Battle” – A journey toward an FTD diagnosis
All of the carers expressed having been through a challenging road to receiving a diagnosis for their spouses’ bvFTD. Challenging stages along this journey included: noticing slow and subtle symptoms, misattributing symptoms to situational, psychological or relationship problems, and feeling isolated in the experience leading up to diagnosis. The excerpt below demonstrates the experience of noticing the initial symptoms of FTD as subtle and gradual changes in the personality and behaviour of her spouse.
C7: It was so gradual. I mean, we're talking sort of over a year, if you're with him all the time. You wouldn't have noticed it[...] But it was it was so subtle, and it wasn't too odd.. (Female, fFTD)
Another carer outlined the process of trying to make sense of the initial changes she was observing with her husband’s behaviour and attributing symptoms of aggression, impulsivity and loss of empathy to psychological or relationship difficulties in their marriage.
C14: Because when he first started behaving differently, I thought it was just a mid-life crisis or our marriage breaking down. So I was on the Internet, looking for ‘mid-life crisis’. When I thought he was just being difficult or awkward, and I'd ask him to do something, he wasn't listening when I was talking to him, and he wasn't taking my worries or concerns or feelings [into account]. (Female, fFTD)
In an attempt to make sense of symptoms carers sought out information that could help them to understand their partner’s unusual and at times distressing behavioural and personality changes. During this process, carers described feeling socially isolated when family, friends or professionals did not take concerns seriously.
C7: I felt like I was completely on my own in saying, “it's not eccentricity. It's not him getting old. It's not stress”[…] So [before receiving the diagnosis] it was a constant battle with explaining for him what was going on. (Female, fFTD)
Barriers experienced in medical services included initial misdiagnoses of other physical or psychiatric conditions and various mental health conditions. Carers described feeling as though concerns were not taken seriously by medical professionals, and that they needed to “bully” (C2) or push for further testing to reach an appropriate diagnosis.
C7: He was diagnosed with bipolar, hypomanic, bipolar or something. […] See I'd Googled, as you do, and I thought he'd got Pick's disease. And I told the people at the memory clinic, "I think it's this." And they said, "It's not. He's passed his memory test." (Female, fFTD)
C7 then recounted having to further justify seeking a new diagnosis by acquiring information about the condition to inform the dementia services clinic about FTD, and advocate for her spouse to receive further specialist diagnostic testing.
Shock, Relief and Fear – Challenges persist post diagnosis
Upon receipt of a FTD diagnosis, 12 carers reported experiencing mixed feelings of relief and fear about the future, and a continued sense of isolation, given the lack of support offered after receiving the diagnosis
C8: When he got the diagnosis, I wasn't happy, but I was relieved that I knew that there was something wrong with him and it wasn't my imagination. […] I kind of felt a bit naively, "Oh, this will be all right. We'll deal with this. I'll just sit in front of the TV and he'll sit there quietly and we'll get on." But I didn't realize with this disease that he's got, it doesn't work like that. I didn't really know what was going to happen. (Female, sporadic bvFTD)
After receiving the diagnosis, some carers described feeling a sense of relief that they now had a label that could explain their spouse’s behaviour. Out of the 12 carers who spoke about their experience of receiving a diagnosis, all but one of the carers (C3) expressed having continued difficulty coping with the uncertainty regarding managing expectations of their spouse's future following diagnosis.
C9: They have termed it, it's genetic and it's progressive. […] Everybody is slightly different. They've all got their own things, but they will get worse. It may become that he gets weaker or he may get violent […] I thought, ‘oh this is going to be dreadful. I'm never going to cope with this.’ (Female, fFTD)
C14 expressed her surprise at the lack of resources received following diagnosis, by contrasting this with receiving a diagnosis of cancer,
C14: It's [not] like cancer. He had cancer... And when he was diagnosed with that he went in for a follow-up every three months. But with the FTD, he's never seen anybody since. And you are kind of left on your own. (Female, fFTD)
The Life-Altering impact – The loss of the spousal relationship and shifting roles
All 14 participants made reference to the many life-altering aspects of becoming a spousal carer for a person with bvFTD. Participants described having difficulty managing caring duties alongside increasing responsibilities in the household, shifting roles, addressing their family’s future risk, and experiencing a deep sense of loss as a result of no longer feeling able to connect or communicate with their spouse.
C7: The main challenge- it's- you go from a family unit with two parents and, you know, doing everything together, to a single parent, which is one thing. But then it's a single parent with a parent- because there's somebody there, but you've got responsibilities, plus you've got someone else to look out for. (Female, fFTD)
Carers additionally described the difficulties of managing responsibilities in the home and the emotional toll that their spouse's behavioural symptoms had on them. Eight carers described difficulties related to sleep as the most significant issue for them. Participants described feeling exhausted and having difficulties falling or staying asleep as a result of their spouse’s inconsistent or interrupted sleeping behaviour. Carers described their own lack of sleep as the main contributor to frustration, lack of patience with their spouse and difficulty coping with caring responsibilities. Others reported that some of the care-recipients slept more than they used to, and this allowed them time for respite in the day, while one carer described oversleeping as an issue that interfered with her ability to share quality time with her spouse (C14).
C1: I do get angry. It’s lack of sleep really… With no sleep, with disruption in your sleep it’s just very very hard... And I feel now that FTD has stolen my patience in a way, because of the situation. (Female, fFTD)
One of the experiences described by spousal carers as the most difficult was the experience of loss, described by seven participants, who expressed having difficulty coming to terms with the reality that they could no longer connect or communicate with their spouse or life partner. This created a deep sense of loss (for example of empathy and memory), with carers likening it to losing a life partner along with their previously held hopes and expectations for their future together.
C3: If you think about it, you’re managing somebody’s life who’s there with you, but you can’t really have any discussion about it what-so-ever, because if you do, it’s forgotten about in seconds and he doesn’t understand the implications. [...] He doesn’t have that emotional response really. So, there’s no point discussing. (Female, sporadic bvFTD)
Four carers likened these difficulties in communicating and changing roles to that of caring for a child. However, they clarified this by stating that unlike children, their spouse had a diminishing capacity to learn and would become increasingly more dependent on them to meet their needs.
C3: At first I felt really awful about almost taking over someone’s life and saying what they could and couldn’t do. But then I did it with children.... And I’ve almost seen that I’m doing that just to manage him now, because he can’t make those decisions for himself. But of course he thinks he can, and that’s always the problem..., I have to treat him, in a way, like he’s a difficult child really. (Female, bvFTD)
Carers of spouses diagnosed with the familial form of bvFTD (fFTD) described the impact of identifying a strong genetic link and the implications this holds for both the carer and the future of young family members. Carers expressed that they felt a deep sense of sadness, grief and fear when thinking about the genetic implications of the disease on their children, and feeling a sense of helplessness in their ability to support their children in the future, as exemplified in the excerpt below.
C6: I have to be careful with her (my daughter), because she sees her dad and I know at the back of the mind she's looking at him and thinking, 'that could be me'. […] I don't tell her everything that he does, or I don't offload to her; I'm not going to because she's my baby and I want to make her better, and I can't. […] That's kind of hard. (Female, fFTD)
Other carers of spouses with fFTD described the emotional challenge of coming to the decision to inform their families of the genetic link, trying to decide when their family would be ‘ready’ to receive news about their own risk of developing the disease.
C1: He (the consultant) thought I should tell my children right away, but I don’t feel it’s the right time at the moment. [...] They’ve got a lot of stress in their lives at the moment, and I don’t feel that’s right. So I’m holding onto that for a moment. [It’s] difficult. (Female, fFTD)
Adapting, Managing Symptoms and Receiving Carer Support
All carers in the study identified the importance of learning to adapt to the caring role, and trying to find ways of managing the challenging symptoms, particularly the behavioural symptoms of their spouse. Carers also expressed the value of receiving support to meet the specific needs of spousal carers of people with bvFTD.
Appreciating, Adapting and Living in the Present
Eleven carers described the benefits of holding an adaptive and positive mind-set in coping with and adapting to the role of becoming a spousal carer. Carers expressed the usefulness of practising appreciation for the positive aspects of their life that were maintained despite the deteriorating illness of their spouse. Examples of ways that carers practised this positive perspective-taking included comparing their situation to those who “have it far more severely” (C10), practising gratitude (C8 below), and implementing transferable skills from other caring roles they had previously occupied. Carers also expressed the helpfulness of planning for the future while also trying to focus on “living day to day” (C12).
C8: Now I realise that possessions don't mean anything […] You know, nobody, nothing can give you what you want back, which is your partner's health. So there's nothing out there that you need. So you then become just happy in your surroundings with what you've got, and just living that life now and making it the best for them that you can, (Female, bvFTD).
Carers of people with fFTD expressed a “bubble of hope” (C14) that came from participating in a trial treatment, which they believed might halt the deterioration of the illness for their spouse, or could offer hope for future generations.
Managing Challenging Behavioural Symptoms of FTD
Behavioural symptoms described as challenging included lack of insight, apathy and compulsivity. These changes were described as confusing, sad, and difficult to manage in public or embarrassing at best. At their worst, they placed the person with bvFTD and others at increased risk of harm. Therefore, carers put in place strategies to manage challenging and risky behavioural symptoms. As C10 describes the experience of trying to manage these risks below:
C10: He was going to hang himself in the woods in the park […] And then [when we came back home] I wondered why he was nearly falling over. I realised it's because he was picking up alcohol and drinking […] And yes, I had to empty our house of alcohol and knives and everything. (Female, fFTD)
Other carers discussed applying other restrictions to reduce risk, which included withholding money to reduce the risk of being taken advantage of by others, or to reduce risk of compulsive spending (C3) or controlling access to food (C14, C4, C6).
Other carers described a difficult experience of having to manage their spouses’ risky behaviour toward others, including violence and aggression.
C8: He started to dislike that son and then he started to dislike me. […] And then that was when the violence started. […] And I didn't let him in the house for a week. I just was so confused. I was so upset. […] He'd have this outburst and then a while later it was, we're all calm now […] And he never spoke about it. (Female, bvFTD)
Another key difficulty for carers was managing their spouse’s behavioural symptoms in public. Carers described needing to put a system of control in place, to monitor, supervise or limit their spouse’s behaviour when in a public space as exemplified by C10 below.
C10: Here was that feeling of embarrassment for me as well, because he comes out and says odd things. And I don't like that. I'm a very quiet, private person, and things like this I find extremely hard. Yes, that's a bit hard- more than hard to accept. (Female, fFTD)
Information gathering and linking to specialist services.
All of the carers acknowledged the value of acquiring knowledge about FTD, connecting with available resources to provide information, advice and carer support or respite. Thirteen carers described the value of obtaining information to educate themselves about the specific symptoms of bvFTD to help them manage expectations of disease progression, and provide helpful tips and resources to support them in their caring responsibilities. Carers did this by seeking out opportunities to learn about FTD from online sources, professionals and other carers.
Eleven carers described the helpfulness of speaking with family, friends, other carers and professionals to gain an understanding of what to expect, and to normalise challenges faced in caring for a person with FTD. Others (e.g. C11) discussed the that specialist FTD support was “much more helpful” than generic support, highlighting the necessity for services to accommodate for the specific needs of carers of people with FTD. These were understood to be different from those caring for people with more general forms of dementia. Six carers identified the importance and usefulness of accessing information and emotional support online.
Three participants expressed mixed feelings about the value of connecting with fellow FTD carers whilst acknowledging that there may be a time in the future when they would find attending carer support groups helpful. Whilst not all carers agreed on the value of using carer support groups, 13 carers identified carer respite as one of the most essential needs amongst spousal carers of people with FTD.
C1: I realised that being together 24/7 was a nightmare for both of us, and that I needed a break, but he needed a break away from me. […] I decided that I really wanted to go to [dementia charity choir] so I got a carer […] I go back to choir once a week, and a girl comes in to sit with him,
Other carers described similar experiences of attending social activities run by dementia support charities, and described them as helpful in enabling them to continue to participate in activities and hobbies of interest while receiving support and respite from daily spousal caring. These connective spaces for carers provided an opportunity to spend time with others with a shared understanding of the carer’s experience. For many, this formed an important part of the carer’s social supportive network post-diagnosis.
C10: I am grateful that I have got a lot of friends and people I knew, and the vast majority coming in now are people we know from the dementia cafes and charity things. (Female, fFTD)
Outside of informal social support and networking spaces, 10 carers highlighted the importance of attending medical follow-ups or receiving nursing support as a way of providing on-going support after diagnosis and during the care-recipients’ lifespan.
C8: I've used Admiral nurses. I've used those quite a few times and they are lovely. They are so supportive and so understanding, because he's been very, very violent to my neighbours (Female, sporadic bvFTD).
Five of the nine participants caring for a spouse with fFTD expressed the value of having prior knowledge about dementia from their spouse’s family. This knowledge, prior to diagnosis, was helpful in preparing them to manage expectations.
C1: We’ve known for quite a long time, because his sister had it…, (Female, fFTD)
The excerpts above highlight the needs of carers by identifying the ways in which they adapt to the new carer role, manage symptoms, and receive crucial support from healthcare services, specialist dementia support and FTD carer support spaces. However, despite carers being able to acknowledge key support that they found helpful, carers also identified significant barriers to accessing and receiving support necessary to help them in their roles as carers of a spouse with FTD.
Lack of General Knowledge - Barriers to support
Twelve carers identified that the most significant barrier to receiving support was a lack of general knowledge about FTD, particularly amongst professional support services.
Lack of Appropriate Services Available
For 12 carers this lack of awareness about FTD meant that carers often felt that there were limited resources suitable to meet their specific needs. C14: And with the support group for dementia, [husband] will walk in and he'll go, "Yeah, I don't look anything like these people. (Female, sporadic bvFTD)
Carers commonly described the younger age of their partner and the unique presentation of FTD behavioural symptoms as barriers to receiving appropriate support,
C4: One of the problems I had when looking for respite for [husband] was that so many of the homes, you actually look and they all say, Oh yeah, we take people from the age of 65”[…] the thought of him at 55, being in a home where the next youngest person is 70. (Female, sporadic bvFTD)
For carers, advice and support received from more general dementia support often did not seem appropriate to meet their specific carer needs. C6 describes how she felt different, and unable to relate to others when attending a dementia carer support course.
C6: I'm doing a course through the Alzheimer's Society […] There's no one else young and there's no one else with FTD. And it is becoming apparent over the weeks how different my situation is to their situation. (Female, fFTD)
imited Accessibility and Provision of Services
Eight carers described having knowledge of an available service, but with barriers that interfered with their ability to access valuable services. Barriers included carers’ lack of knowledge about available resources and limited available resources in their area.
C4: Yeah, the thing is, I find support quite confusing […] I get to the stage where I ask, “Well who are the people I see for this, and that?” […] I am aware that there is a reasonable amount of support in [my area], but as I say, it’s just knowing who to contact. (Female, sporadic bvFTD)
Carers experienced a general lack of awareness about FTD amongst healthcare services, which may be linked to their experience of having limited availability of specialist support to meet the unique needs of spousal carers of people with bvFTD.