Pre-decision regret before transition of dependents with severe dementia to long-term care

“(4) We reviewed the main theme, which was the focus for re-analysis – here: ‘pre-decision’ (Table 1, 32 interviews) – and its sub-themes (Table 3) and discussed whether these reflected the meanings evident in the re-analysed dataset as a whole.(38) (5)We discussed whether the sub-themes developed described the theme’s…”

“Although shame is connected to a person’s internalised moral standards, Tangney et al.(32) claim that it is a ‘public’ emotion as it is evoked by public exposure and disapproval.”

“1).(22) These are universal challenges which strongly impact family caregivers’ physical and mental health and well-being.”

“441).(45) To avoid this, carers may make a valiant effort ‘to balance their caregiving role with maintaining previously held relationships, even though this [may prove] difficult’ (p.”

“Placing a family member in a nursing home is for many family carers one of the most painful and morally difficult decisions to make,(1) and it may be an intensely emotional experience.(2) Several studies on the determinants of nursing home placement have been published.”

“Dementia is a chronic neurodegenerative disease mainly associated with ageing.(21) Patients with severe dementia will gradually develop behaviours perceived as deviant in most – if not in all – societies because of abnormal cognition, perception, mood or behaviour.”

“52).(12) Family carers need to bemade aware of the formal and informal services available and how to access these.”

“While they may harbour prospective emotions of hope and relief, they may also experience worry, shame and guilt, even if they realise that they no longer are able to care for their ageing dependent.(29) Their predecision regret may also include that they will miss the feeling of mutuality with their dependent and the…”

“They may also feel that they, by admitting a family member to a care facility, have failed their obligation since to do so does not conform with the cultural expectations of many ethnic groups and becomes a sign of the family’s moral failure.(14,16,24,30) The stigma of institutionalisation of dependents with dementia…”

“Their predecision regret may also include that they will miss the feeling of mutuality with their dependent and the gratification their relationship offers them.(25,26,42) They may also feel that they, by admitting a family member to a care facility, have failed their obligation since to do so does not conform with th…”

“Caring for persons with severe dementia may incur anxiety, emotional stress, poor sleep, exhaustion, depression and also sadness because their loved one is no longer the person they previously knew.(3,23,24)”

“Caregivers find it particularly difficult to manage wandering, psychotic behaviours(12) and aggression.(11) This was mirrored among our interviewees as many found themselves ‘trapped’ and ‘imprisoned’.”

“In Turkey and Morocco, family caregivers reported that admitting dependents to a nursing home is not done in their community.(30) If a decision is made by the family to institutionalise the person with dementia, this may be condemned by the community.”

“Park et al.(7) found that particularly older caregivers ‘expressed their concern for other people’s view and shame for their decisions’ (p.”

“This is not least the case in areas where people with severe dementia are believed to be witches.(41) Hence, caregivers may lack support during the decision-making process and be blamed for skirting their duties after the patient’s nursing home transition.”

“This is often connected to a collectivistic world view.(8,11,14,30) Spouses tend to feel that they have to neglect and/or adjust their own needs to prioritise the needs of the person with dementia(6,12) as they have to observe and supervise him or her around the clock.”

“Although the ability to copewith the carewithin the family tends to be a question of honour and duty, many families gradually find this to be no viable solution.(7,24) When family caregivers reach this point, they have passed through the pre-decision phases of Kirkebøen and Teigen(27) during which alternatives are con…”

“Caring for persons with severe dementia may incur anxiety, emotional stress, poor sleep, exhaustion, depression and also sadness because their loved one is no longer the person they previously knew.(3,23,24)”

“Even if the family carers have some knowledge about dementia, they may lack insight into how physical and mental symptoms are related to the development of the disease.(46,47) There will, in most cases, come a time when seeking professional care is starting to loom in the horizon as unavoidable.”

“They may also feel that they, by admitting a family member to a care facility, have failed their obligation since to do so does not conform with the cultural expectations of many ethnic groups and becomes a sign of the family’s moral failure.(14,16,24,30) The stigma of institutionalisation of dependents with dementia…”

“Many caregivers find themselves in a squeeze between their need of respite from their care burden and the patients’ need of professional care, on the one hand, and the feeling of duty and worry about being stigmatised by their surroundings, on the other.(7,14,28,40) According to Wang et al.”

“In Korea, China, Japan and other East Asian countries, filial piety based on Confucianism is an important cultural norm, which emphasises the responsibility to care for aged parents.(1,7) In Turkey and Morocco, family caregivers reported that admitting dependents to a nursing home is not done in their community.”

“However, these caregivers often receive more support from their surroundings as professional care tends to be more socially accepted.(4) 8 Nursing Ethics XX(X)”

“Many caregivers find themselves in a squeeze between their need of respite from their care burden and the patients’ need of professional care, on the one hand, and the feeling of duty and worry about being stigmatised by their surroundings, on the other.(7,14,28,40) According to Wang et al.”

“Their predecision regret may also include that they will miss the feeling of mutuality with their dependent and the gratification their relationship offers them.(25,26,42) They may also feel that they, by admitting a family member to a care facility, have failed their obligation since to do so does not conform with th…”

“The Oslo and Balkan family interviewees clearly indicated that they still wanted to care for their parents themselves, and when the decision to seek professional care was unavoidable, they felt guilt, shame and pre-decision regret.(7,27) Park et al.”

“Moreover, our finding that many informal caregivers lacked support from healthcare professionals during nursing home transitions in dementia care (for example, when making transition-related decisions) is supported by other studies (Hanssen et al., 2021; Lord, Livingston, Robertson, & Cooper, 2016).”

“…different levels of cognitive impairment, which is useful for understanding the timing of changes indicative of further functional decline; for example, changes in routine such as leaving a stove on can be an indicator for greater care provision, such as the transition into care facilities [67].”