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- Caring For Nigel: Diary of a Wife Coping With Her Husband's Dementia and Multiple System Atrophy
- Caring For Nigel Diary of a Wife Coping With Her Husbands Dementia and Multiple System
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Still Alice - Wikipedia
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Although the service is led by Sue Ryder, it works with more than 15 partners across the county. A helpline offers a single point of access and key to delivery is a team of dementia navigators to guide people through the system. Carers and patients are made aware of the different options available to them for support, and are helped to build resilience, confidence and the ability to make decisions about future care in an informed way.
Dementia Friendly cafes have been developed. In the first few months of the service more than people registered for it but since then numbers have soared to 1, and show no sign of slowing down. We are able to get in with the information they need and prevent them moving on to other statutory services. She adds the team were delighted to win the award.
But even down to the night of the awards I did not think we would win. The judges were impressed by how a woman with dementia and her husband viewed the service as making them feel resilient and in charge of their future. They liked the way that no one was discharged by the service and it was always there for them. There was a real sense of keeping a family together and promoting active lives together. Patients and carers felt they had gained knowledge which had taken away a lot of their anxieties and helped them plan for the future.
Some carers, predominantly those with partners with PDD, spoke of feelings of loss and grief, both in terms of who the person with PD was and the change in life expectations. Perceptions of people with PD were altered by dementia; a key issue was how the person with PD was no longer themselves, particularly those who also had dementia. Cognitive impairment had a bigger emotional impact on carers compared to the physical impact of the motor symptoms.
The grief centred on how PD and cognitive impairment was taking their loved one from them; some carers referred to that person as already gone. The person they were left caring for was someone they did not recognise. The sense of emotional loss in carers was evident, owing to a mourning of their planned future, restricted social life, and their relationship with the person with PD.
For some carers, it was the loss of mutuality as a result of cognitive impairment in PD. The grief encompassed interpersonal loss for their partner, where they had become the sole carer rather than having a mutually beneficial relationship. In addition, the carers had lost their source of social support; they provided increasing support for the person with PD while having no support to cope with their own feelings of anxiety, grief, and powerlessness.
Only one carer whose husband had PD but no cognitive impairment expressed similar feelings. Although there were no cognitive problems, apathy and depression in the participant with PD were barriers to mutuality and perpetuated feelings of loss and emotional distress in the carer. This theme centred on the issues around coping and adjustment to PD and cognitive impairment in participants with PD. This theme explored the facilitators and barriers to successful coping.
Participants with PD and no cognitive impairment generally showed good psychosocial adjustment. They used cognitive and behavioural strategies that facilitated good adjustment when faced with PD-related challenges, such as seeking social support, acceptance of their illness, appropriate expression of emotions, and maintaining their activity levels despite the possible limitations due to having PD.
Some participants with PD and cognitive impairment had coped better than others. Those that showed good psychosocial adjustment used problem-focused coping strategies to help overcome symptoms of cognitive impairment. Alarms or pill boxes were used to help participants regulate their own medication; some used calendars regularly to remind them about important events and appointments. These coping methods allowed them to maintain some of their activities and independence; it was evident that participants who used problem-focused coping strategies had accepted changes, both physically and cognitively, and had some perceived control over these changes.
In contrast, some participants with PD and cognitive impairment found coping challenging. For some, their future had changed from something they had control over, to something that was unknown and uncertain. This was difficult to adjust to for some participants. The negative illness representations that some PD participants had, particularly concerning dementia and the possibility of developing dementia in the future, were barriers to high positive affect.
Caring For Nigel: Diary of a Wife Coping With Her Husband's Dementia and Multiple System Atrophy
Instead, these participants were distressed and had low positive affect:. Rather than using an appropriate expression of emotion, some PD participants vented their emotions. Participants talked about how their condition was unfair, that they felt bitter and angry. This was partly driven by perceived helplessness or low perceived social support.
Participants were frustrated by the necessity of being cared for. Sometimes this was because they did not want to worry their loved ones, whereas other individuals described themselves as having always been less inclined to seek social support. These participants had low perceived social support and repressed their emotions. PD and cognitive impairment was a disruption to everyday activities in several participants.
Some participants had reduced or even avoided activities where they perceived difficulties or potentially distressing situations. The apprehension of being seen as stupid or less than they once were by others was upsetting for some participants, which perpetuated their wish for avoidance or people or certain situations. A small number of participants had dysfunctional cognitions and bias. These participants would catastrophize, where small issues with memory or their future would escalate into serious issues.
This can be a barrier to good psychosocial adjustment. These participants had low self-esteem, low positive affect, and negative illness perceptions. Coping and adjustment varied between the three groups of carers. Most carers who cared for someone without cognitive impairment had good psychosocial adjustment, where they were able to cope well with illness stressors. Carers of participants with PD without cognitive impairment were able to be more independent that those who cared for someone with PD and cognitive impairment. These carers had increasing responsibilities due to physical disability in the person with PD; however, they identified the importance of not sacrificing their own needs to those of their partner or family member.
This was partly motivated by the awareness that the well-being of their partner or family member was dependent on the maintenance of their well-being. Respite from caring facilitated coping in these carers as they were able to rest, seek social support from other sources, and time to gain fresh perspective through the implementation of problem-focused coping strategies.
In contrast, there was tension between the needs of carers and coping with cognitive impairment and PD in their partner or family member. Carers of participants with PDD found it more difficult to cope well with cognitive impairment, and to a lesser extent some mild cognitive impairment carers also found good psychosocial adjustment difficult.
These carers had high perceived stress, perceived helplessness, and repressed their emotions; these manifested as self-blame, wishful thinking, venting of negative emotions, and catastrophizing. As a result, carers felt unsupported, isolated, and unable to cope:. In addition to increased responsibilities as a result of physical and cognitive disability, there were challenging symptoms and behavioural problems that they also had to cope with. Hallucinations, delusions, and outburst of aggression were not recognised by the person with PD; however, they were evidently distressing for the carers and challenging to cope with.
These were very salient intrusions to the lives of the carers and caused disruptions which were unpredictable and distressing. This made it difficult for carers to implement problem-focused coping strategies:. Conversely, some carers found meaning and purpose in being a carer, which facilitated good psychosocial adjustment and coping.
Caring For Nigel Diary of a Wife Coping With Her Husbands Dementia and Multiple System
There was increased appreciation for their family member and expressed an enrichment to their lives from caring. Carers who found meaning and purpose exhibited positive personal growth, where they became more patient, understating, and resilient as a result of caring for their loved one.
They further observed gains in the relationship, where the relationship improved with the person with PD. This qualitative study is the first to explore the impact of cognitive impairment in people with PD and their carers. The findings highlight that for some participants with PD, cognitive impairment negatively impacted on their quality of life and caused emotional distress, but this was not the case for all.
It seemed that if PD participants did not have an awareness of any cognitive impairment, and it was not intrusive to their daily lives, then their emotional equilibrium was not disturbed [ 19 ]. In carers, however, we found that cognitive impairment has a greater emotional impact than the physical symptoms associated with PD.
Central to emotional distress in carers were feelings of loss of their loved one, helplessness, and feeling overwhelmed by cognitive impairment and associated symptoms. While recent quantitative studies have found that cognitive impairment is associated with poorer quality of life in both patients and their carers [ 2 , 3 , 32 , 33 ], they have been unable to determine the impact it has on individuals and how they cope with its effects. We were able to explore this in our study. Our data showed that cognitive impairment threatened emotional equilibrium [ 19 ] and affected a range of aspects of their daily lives: social participation, leisure activities, independence, daily activities, mood, and identity.
Challenges to identity and perceived role were important issues, where participants described feeling less confident or insignificant, and PD patients reversed roles with their carer. Through living with PD and cognitive impairment, their previous self-image and social identity were no longer congruent with their current physical and mental state; PD participants suggested that periodic deteriorations caused a crisis which disrupted their emotional equilibrium [ 19 , 34 ]. Such crises have been proposed to trigger a grief-like mourning period, where individuals grieve for the person they were and their past life before the disease [ 35 ].
Comparably, role reversal and dissatisfaction has been described previously in carers and people with dementia [ 37 ] but has not previously been investigated in PD. Previous studies have illustrated that people with PD who have to accept care and support can feel humiliated and excluded, as well as excluded socially and misunderstood, while partners who were the source of support felt neglected and isolated [ 12 ]. This suggests that needing support and becoming that source of support is a potential stressor and could result in poor psychosocial outcomes without the implementation of successful coping strategies [ 19 ].
We have extended existing knowledge of cognition and coping in PD. Our findings show that periodically, all PD participants described coping difficulties including uncertain futures, depression, worry, fear, guilt, and anger, which are indicative of poor psychosocial adjustment [ 19 ].
Those with cognitive impairment found successful coping difficult and used unhelpful strategies such as wishful thinking, catastrophizing, venting, and negative illness representations; these have been described as emotion-focused strategies by the stress and coping model of adjustment [ 38 ]. PD participants without cognitive impairment used problem-focused coping to implement cognitive and behavioural factors to successful adjust more often than those with cognitive impairment [ 38 ].
This may be due to participants with PD having insufficient cognitive reserve to implement appropriate coping techniques to facilitate good psychosocial adjustment. Cognitive reserve has been previously suggested as necessary to instigate effective coping strategies [ 21 ]. Two quantitative studies proposed that mild cognitive dysfunction could impair the implementation of helpful coping strategies [ 22 ], causing difficulties with positive reappraisal, goal setting, and adjusting expectations [ 23 ].
We found that carers of people with PD and cognitive impairment experienced greater emotional distress due to the cognitive symptoms compared to the physical symptoms; carers of PDD participants expressed the greatest emotional distress and coping difficulty. They also grieved for their change in circumstances and for the loss of their planned futures.
Predeath grief, also referred to as latent grief or social death, has previously reported that cognitive change was the biggest predictor of carer grief in PD [ 39 ]. Neuropsychiatric symptoms in PDD have previously been associated with increased carer distress [ 40 ], similar to the findings of our study.
A qualitative study by Williamson, Simpson, and Murray [ 13 ] conveyed diverse ways in which spousal carers and people with PD adapted to neuropsychiatric symptoms, with varying success and distress. We found carers expressed difficulty coping and adjusting to hallucinations and delusions our study in comparison to Williamson et al. Perhaps, this is because the participants in our study were more recently diagnosed with PD, and neuropsychiatric symptoms had first occurred relatively [ 19 ].
Our study found that a good mutual relationship between the carer and the patient was protective, with some carers suggesting that they experienced positive personal growth as a result of caregiving. Comparisons can be found in dementia studies; Netto et al. Our participants further observed gains and improvement in the relationship with the care recipient.
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Lyons et al. The strengths of this study include the comparatively large number of participants, rigorous methodology, and purposefully sampled participants using theoretical criteria to give a representative sample of carers and people with PD across cognitive groups. Extensive quotations have been presented to ensure the credibility of the analysis. We have also drawn parallels of our findings from other chronic diseases, which denote the validity of our findings.
This study was part of a larger mixed-methods study and was able to address the disparities that the quantitative arm of the study.
There are several limitations to this study. First, the gender ratio of PD participants and carers were both uneven, with more male PD participants and more female carers taking part. However, this reflects the reality of the disease, where proportionally more men are diagnosed with PD, and that society relies on female care provision [ 44 , 45 ]. Similarly, most of the carers were the spouse or partner of the person with PD; thus, the experiences of other relatives, such as adult children as carers, are underrepresented.
Future studies should include a wider range of relationships to the care recipient and should also compare the experiences of patients and carers with different types of dementias. This study has highlighted that coping and adjustment to PD and cognitive impairment varies among patients and their carers.
For carers, cognitive impairment in their partner or family member had a greater emotional impact compared to the physical symptoms of PD, where carers experienced predeath grief. The discussion which developed around protective factors provides possible opportunities for future psychological interventions, such as therapies to improve mood and successful adjustment.
By promoting protective factors to enhance existing coping mechanisms, better quality of life for both carers and the person with PD may be achieved to prevent longer term decline and untimely nursing home placement. Rachael A. Lawson was involved with study design, coordination of the study, participant recruitment, and data collection, analysis, and interpretation and drafted the manuscript.