How to plan for the progression of dementia

2021 ◽  
pp. 263-280
Author(s):  
Andrew E. Budson ◽  
Maureen K. O’Connor

As your loved one begins to experience more problems with thinking and memory, they will need help managing their health care, finances, and other aspects of daily living. They may need to leave their home in order to receive the amount or type of care they require. Preparing legal documents such as a will, power of attorney, and health care proxy is an important step in planning for the future. Having conversations with your loved one early after a diagnosis ensures that they can participate in future planning as much as possible, easing your burden as increased care is required. Even if they don’t want to participate, you can still explore options so you will be ready when a crisis occurs.

Author(s):  
Andrew E. Budson ◽  
Maureen K. O’Connor

As your loved one begins to experience more problems with thinking and memory, they will need help managing their health care, finances, and other aspects of daily living. They may need to leave their home in order to receive the amount or type of care they require. Preparing legal documents such as a will, power of attorney, and health care proxy is an important step in planning for the future. Having conversations with your loved one early after a diagnosis ensures that they can participate in future planning as much as possible, easing your burden as increased care is required. Even if they don’t want to participate, you can still explore options so you will be ready when a crisis occurs.


Author(s):  
S Lee ◽  
A Kirk ◽  
C Karunanayake ◽  
M O’Connell ◽  
E Kirk ◽  
...  

Background: A will, power of attorney and advanced healthcare directive are critical to guide decision-making in people with cognitive decline. We identified characteristics that are associated with the existence of these documents in patients who presented to a rural and remote memory clinic (RRMC). Methods: 95 consecutive patients were included in this study. Patients and caregivers completed questionnaires on initial presentation to the RRMC and patients were asked if they have legal documents. Patients also completed neuropsychological testing. Statistical analysis (t-test and χ2 test) was performed to identify significant variables. Results: 70 patients had a will, 62 had a power of attorney and 21 had an advanced healthcare directive. Having a will was associated with good quality of life (p=0.001), living alone (p=0.034), poor verbal fluency (p=0.055) and European ethnicity (p=0.028). Factors associated with having a power of attorney included good quality of life (p=0.031), living alone (p=0.053) and poor verbal fluency (p=0.015). Old age (p=0.015), poor verbal fluency (p=0.023) and severity of cognitive and functional impairment (p=0.023) were associated with having an advanced healthcare directive. Conclusions: Our results indicate that poor quality of life, good verbal fluency, non-European ethnicity and living with others are associated with a lower likelihood of creating legal documents in patients with cognitive decline


Author(s):  
Sydney Lee ◽  
Andrew Kirk ◽  
Emily A. Kirk ◽  
Chandima Karunanayake ◽  
Megan E. O’Connell ◽  
...  

ABSTRACT:Background: A Will, Power of Attorney, and Advanced Healthcare Directive are critical to guide decision-making in patients with dementia. We identified characteristics that are associated with the existence of these documents in patients who presented to a rural and remote memory clinic (RRMC). Methods: Ninety-five consecutive patients were included in this study. Patients and caregivers completed questionnaires on initial presentation to the RRMC and patients were asked if they had legal documents. Patients also completed neuropsychological testing. Statistical analysis (t-test and χ2 test) was performed to identify significant variables. Results: Seventy (73.7%) patients had a Will, 62 (65.3%) had a Power of Attorney, and 21 (22.1%) had an Advanced Healthcare Directive. Having a Will was associated with good quality of life (p = 0.001), living alone or with a spouse or partner only (p = 0.034), poor verbal fluency (p = 0.055), and European ethnicity (p = 0.028). Factors associated with having a Power of Attorney included good quality of life (p = 0.031), living alone or with a spouse or partner only (p = 0.053), and poor verbal fluency (p = 0.015). Old age (p = 0.015), poor verbal fluency (p = 0.023), and greater severity of cognitive and functional impairment (p = 0.023) were associated with having an Advanced Healthcare Directive. Conclusions: Our results indicate that poor quality of life, good performance on verbal fluency, Indigenous ethnicity, and living with others are associated with a lower likelihood of legal documents in patients with dementia. These factors can help physicians identify patients at risk of leaving their legal affairs unattended to. Physicians should discuss the creation of legal documents early on in patients with signs of dementia.


2018 ◽  
Vol 7 (3) ◽  
pp. 57-75
Author(s):  
Sadaf Batool Naqvi ◽  
Abad A. Shah

This article describes how mobile health (mHealth) has grown from infancy stage to toddler stage due to advances in the technology. It has the potential for further growth as it is low-cost health care. For its further growth, it is necessary to widen its scope. In this article, a proposal is presented to develop a new and advanced mHealth care system, and its first step that is modelling is reported. In modelling, historically, a model of a temporal object system (TOS) is used. The model empowers users of the proposed mHealth care system to define, retrieve and manipulate all objects historically, in a uniform fashion, and also to keep historically the changes that occur to the objects. Later, these historically stored objects can be consulted during making essential and crucial decisions about the patients (objects) and other objects of the system, and it can save both lives and money. Also, the stored objects can be used in the future planning and research.


2021 ◽  
Vol 2 (20) ◽  
pp. 4
Author(s):  
Nataliia Korobtsova

The article analyzes the issues of the patient's will in medical relations, it is proved that it is due to the expression of will to the proposed treatment (consent or refusal) that the patient is a full active participant in this relationship. However, his inability to express his will, temporary or irreversible, caused by the development of the disease, the peculiarity of its course may be an obstacle to determining his real desire for future treatment, medical intervention and jeopardize the violation or inability to exercise the patient's right to consent or refuse medical intervention. To avoid this, there is a certain legal institution in the legislation of a number of countries around the world, through which it is possible to plan your treatment in advance, to refuse it, in case of inability to do so in the future. In some legal systems, this institution has different names - "wishes made earlier", "medical will", "patient's will", "power of attorney to make decisions on health care", "patient orders" and so on. The paper analyzes the content of this institute, considers the views of scholars on it, made a comparative analysis with the legal construction of the "testament" and concluded that there are significant differences between these constructions, which makes it impossible, from the author's point of view, to call this will "testament". . It is proposed to consider such a will as one of the patient's rights - "patient order", which is made in writing by an adult - the patient, regardless of the type and stage of the disease in case of possible future inability to consent to medical examination, intervention or treatment. The patient has at his disposal not only his will for the future (list of medical procedures that are allowed to be performed in relation to his health, which are not), but also the case when it can be used (for example, coma, autonomic state). It is impossible to conclude it through a representative, because in this case the will of the patient is unknown. This order is executed by proxies (relatives, close persons, representatives, doctors, etc.). Despite the fact that in Ukraine today this legal institution is absent, the main directions of recoding of civil legislation indicate the possibility of its appearance in the updated legislation  


Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4606-4606
Author(s):  
Hubert Wysoglad ◽  
Elzbieta Szczepanek ◽  
Ositadima Chukwu ◽  
Weronika Lebowa ◽  
Wiktor Nowak ◽  
...  

Abstract Introduction Introduction of imatinib and other tyrosine kinase inhibitors (TKIs) dramatically improved the quality of life (QoL) of patients with chronic myeloid leukemia (CML). However, the impact of Covid-19 on the QoL of patients with CML has not been measured so far. We aimed to investigate the QoL of CML patients during the Covid-19 pandemic, with a special focus on their personal beliefs on the pandemic, vaccinations, changes in their functioning and experience with the health service at this time. Methods Due to social distancing measures, we conducted a survey with 29 CML patients via the internet and telephone interview. 10 patients were female, 19 were male. The median age was 54. Responses were collected during and after the third wave of the SARS-COV-2 pandemic in Poland between 24 th March 2021 and 18 th July 2021. The survey was divided into three sections. Section 1 assessed patients' opinions on the pandemic, social distancing measures, and access to the health care system during the pandemic, as well as the impact of existing restrictions on their QoL. Section 2 assessed opinions on the functioning of the health care system during the pandemic, and the effect on transportation means to health care centers. Here, patients could choose more than one statement that best applied to the existing situation. Section 3 assessed patients' attitudes towards vaccinations against the influenza virus and SARS-COV-2 and their preferences for the type of vaccination. Results 72% of patients agreed that Covid-19 is a significant threat and disagreed that restrictions imposed during the pandemic were too severe. 69% commonly agreed that other people did not adequately obey social distancing measures while assessing that they comply with the existing guidelines (83%). 55% of patients agreed that the pandemic had a significantly negative impact on their QoL. 72% reported not losing control of CML during the pandemic, and nearly all (93%) stated that the pandemic did not impact their adherence to treatment with TKIs. In Section 2, the most commonly reported health care problem during the pandemic was long waiting times for medical consultations (19 replies). Difficulty with access to the lead physician and complicated, unclear procedures with hospital admission were also reported frequently (15 and 14 replies, respectively). 40% of patients were forced to change their means of transportation to healthcare facilities from public transport to a personal vehicle. In the last five years, only 34% of patients in the cohort received a vaccine against the influenza virus. Of these, 42% claimed this was due to medical personnel's inadequate information, and 37% deemed the influenza vaccine to be ineffective. 66% of patients reported to have already received the Covid-19 vaccination (45% patients had received two doses, 21% received one dose); 21% of patients did not receive the vaccination but reported that they intended to, and 14% (4 patients) of patients reported that they do not want to receive the vaccination against the SARS-COV-2 virus. Of these, 3 considered the vaccines insufficiently tested in clinical trials; 2 explained that they have contraindications to the vaccinations, and 1 patient was afraid of adverse effects related to the vaccinations. 2 of these patients had university-level degrees, 1 had a high school diploma, and 1 received vocational education. 2 lived in towns with < 20 thousand inhabitants, 1 in a city of 20-50 thousand inhabitants and 1 in a city of 50-100.000 inhabitants. 3 were female, 1 was male. When asked to determine which Covid-19 vaccination they would prefer, had they been given a choice, 80% picked the Pfizer-Biontech vaccine, 8% the Johnson and Johnson vaccine, 4% the Moderna vaccine, 4% the Sputnik vaccine, and 4% claimed that the type of vaccine did not make a difference. 0% chose the Astra-Zeneca vaccine. Limitations A limitation of our study is the small cohort of patients. A larger group of patients could help provide a more accurate measurement of patients' opinions. Yet, given the lack of previous reports, this is a good foundation for the future. Conclusions The Covid-19 pandemic has negatively impacted the QoL and access to healthcare for CML patients, although it did not impact adherence to treatment. Most patients were vaccinated against Covid-19 or prepared to receive the vaccine. More attention and time needs to be given to patients' education regarding vaccinations in the future. Figure 1 Figure 1. Disclosures Sacha: Roche: Honoraria, Speakers Bureau; Novartis: Honoraria, Speakers Bureau; Bristol-Myers Squibb: Honoraria, Speakers Bureau; Pfizer: Honoraria, Speakers Bureau; Angelini: Honoraria, Speakers Bureau.


2021 ◽  
Author(s):  
Ankit Jain ◽  
Rebecca Kate Prettyman ◽  
Marko Mihailovic ◽  
Zoran Martinovich ◽  
Jeffrey Rado

BACKGROUND Beginning in March 2020, state-of-emergency policy changes at the state and federal level greatly expanded accessibility to telehealth, allowing patients to receive ongoing care while limiting in-person interactions to mitigate transmission of COVID-19. OBJECTIVE The purpose of this study was to broadly understand patients’ satisfaction with and attitudes towards receiving telemental health care 10 months into the COVID-19 pandemic. METHODS A questionnaire was designed and administered to elicit comprehensive feedback about telehealth care, and to gauge participants’ desire to use it in the future. Survey questions were rated on 5-point Likert scale. Participants were asked about their desire to continue telemental health care post-pandemic. RESULTS Most of the 602 participants reported favorable experiences with telemental health care. 505 (84.4%) were satisfied or extremely satisfied, and 527 (88.6%) rated the use of telehealth extremely easy or easy, 531(89.1 %) rated overall comfort with telehealth as very comfortable or comfortable. A majority felt at ease using a private 491(82.5%) and quiet space 509(86.0%) to communicate using telehealth. Perceived benefits of telemental health care were varied and included improved ability to manage work and family obligations. Quality of care was comparable to in-person visits. A majority 523(86.88%) of participants would like to have telemental health offered as an option in the future, even after the pandemic resolves. CONCLUSIONS Nearly a year into the COVID-19 pandemic, patients rated telemental health care highly across measures of satisfaction, comfort, ease of use, and quality of care. Participants reported tangible benefits of telemental health care such as time and money savings, and also intangible benefits, like increased flexibility and decreased stress. Participants expressed their desire that telemental health care be a readily available option in the post-pandemic future. Maintaining accessibility to telehealth care for psychiatric patients in the future should be a priority. CLINICALTRIAL ClinicalTrials.gov NCT04693052; https://clinicaltrials.gov/ct2/show/NCT04693052


ASHA Leader ◽  
2011 ◽  
Vol 16 (6) ◽  
pp. 9-9
Author(s):  
Paul R. Rao
Keyword(s):  

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