Advance care planning in dementia care: Wants, beliefs, and insight

Abstract

Background: Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures. Aim: To explore the view of people in the early stage of dementia on planning for future care. Research design: The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven. Participants and research context: Dementia nurses assisted in the recruiting of people with dementia for participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study. Ethical considerations: People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information. Findings: The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now. Discussion: High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group. Conclusion: The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration.

Advance Care Planning interventions for older people with early-stage dementia: A scoping review

“…26,43,44 Dickinson et al. 22 noted that life-long conversations led to a confidence in unspoken knowledge to help inform future decision-making. However, according to research, family caregivers may lack full comprehension of what people with dementia see as important and how it relates to care.…”

“…[16][17][18] In the early stage of dementia, a person might already struggle to imagine what the future might hold and to plan for coming care needs. [19][20][21][22] The progressive loss of abilities leads to a vulnerability that becomes total and extraordinary as it is situated in all dimensions of the being. 23,24 ACP for people with dementia has received attention in recent years.…”

Legal Representation of Patients with Dementia in Long Term Care Settings

“…In fact, it should involve multiple members of the multidisciplinary team (MDT), but most importantly the patient and their family and friends. Moreover, a diagnosis of dementia can be very distressing for the patient, so an ACP has the potential of empowering the patients leading to greater peace of mind [8]. In fact, a Cochrane review carried out by Walsh SC, et al [9], concluded that palliative care at end of life and ACP in dementia management has the potential to improve the patient's quality of life and improve concordance of care [9].…”

“…In fact, it might cause more anxiety if done at the time of diagnosis which is already distressing in itself. As a result, certain patients might be reluctant to have such conversations [8]. Moreover, reluctance of these discussions are also effected by cultural aspects.…”

“…Moreover, reluctance of these discussions are also effected by cultural aspects. For instance, Tetrault A, et al [8] conducted a qualitative study on the views of Finish patients suffering from Dementia on ACP. This concluded that some patients liked the idea to plan ahead but others preferred living day by day.…”