scholarly journals The meaning of being young with dementia and living at home

2013 ◽  
Vol 3 (1) ◽  
pp. 3 ◽  
Author(s):  
Dag Rostad ◽  
Ove Hellzén ◽  
Ingela Enmarker
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Lived Experience ◽  
Self Determination ◽  
Subjective Experiences ◽  
Narrative Interviews ◽  
People With Dementia ◽  
Hermeneutic Approach ◽  
At Home

Studies that explore the subjective experiences of younger people with dementia living at home are rare. Therefore, the aim of this study was to gain an understanding of the lived experience of younger persons (<65 years) who lived at home and suffered from earlyonset dementia, and the meanings that might be found in those experiences. The researchers conducted a qualitative study using a phenomenological hermeneutic approach. Data were collected through narrative interviews with four informants. Two men and two women ages 55 to 62 participated. Three of the informants lived with their spouses, and one lived alone, close to his children. The informants’ subjective experiences revealed the following four key themes: entrapment by circumstances, loss of humanity, the preservation of hope and willpower, and the desire to ensure one’s quality of life. These themes provide a deeper understanding of the experiences of younger people with dementia who live at home. The theme of preserving hope and willpower rebuts prejudicial contentions that life with Alzheimer’s syndrome does not have anything more to offer and may be seen as diminishing a patient’s humanity. Patients’ autonomy and self-determination should not be ignored. In all phases of the progression of dementia, the person in charge of giving care to the relative with dementia should be ethically aware of and reflective to the progress of his/her illness.

Systematic review of the effectiveness of non-pharmacological interventions to improve quality of life of people with dementia

2012 ◽  
Vol 24 (6) ◽  
pp. 856-870 ◽  
Author(s):  
Claudia Cooper ◽  
Naaheed Mukadam ◽  
Cornelius Katona ◽  
Constantine G. Lyketsos ◽  
David Ames ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Coping Strategy ◽  
Cognitive Stimulation ◽  
Care Homes ◽  
Improve Quality ◽  
Family Carer ◽  
Pharmacological Interventions ◽  
People With Dementia ◽  
At Home

ABSTRACTBackground: People with dementia report lower quality of life, but we know little about what interventions might improve it.Methods: We systematically reviewed 20 randomized controlled trials reporting the effectiveness of non-pharmacological interventions in improving quality of life or well-being of people with dementia meeting predetermined criteria. We rated study validity with a checklist. We contacted authors for additional data. We calculated standardized mean differences (SMD) and, for studies reporting similar interventions, pooled standardized effect sizes (SES).Results: Pooled analyses found that family carer coping strategy-based interventions (four studies, which did not individually achieve significance; n = 420; SES 0.24 (range 0.03–0.45)) and combined patient activity and family carer coping interventions (two studies, not individually significant; n = 191; SES 0.84 (range 0.54–1.14)) might improve quality of life. In one high-quality study, a care management system improved quality of life of people with dementia living at home. Group Cognitive Stimulation Therapy (GCST) improved quality of life of people with dementia in care homes.Conclusion: Preliminary evidence indicated that coping strategy-based family carer therapy with or without a patient activity intervention improved quality of life of people with dementia living at home. GCST was the only effective intervention in a higher quality trial for those in care homes, but we did not find such evidence in the community. Few studies explored whether effects continued after the intervention stopped. Future research should explore the longer-term impact of interventions on, and devise strategies to increase, life quality of people with dementia living in care homes or at home without a family carer.

Norway

2019 ◽  
pp. 211-218
Author(s):  
Knut Engedal
Keyword(s):  
Quality Of Life ◽  
Health Services ◽  
Welfare State ◽  
Family Caregivers ◽  
Residential Care ◽  
Healthcare Professionals ◽  
Tax System ◽  
People With Dementia ◽  
At Home

Norway has 5 million inhabitants, of whom 200,000 are aged above 80 years. The country is a welfare state, with a tax system covering most health services for its citizens. It is estimated that 78,000 people in Norway suffer from dementia, of whom 60% live at home and the remainder in residential care. In 2007, the first National Dementia Plan was launched (2007–2015), and the second in 2016 (2016–2020). The main goals of the two Plans are to develop services across the country to improve the care and quality of life for all people with dementia and their family caregivers, as well as increase the knowledge of dementia among healthcare professionals. In addition, the Plans also aim to improve awareness of dementia in society as a whole and to develop and implement measures to help create a more dementia-friendly society.

scholarly journals Unmet needs, quality of life and support networks of people with dementia living at home

2010 ◽  
Vol 8 (1) ◽  
pp. 132 ◽  
Author(s):  
Claudia Miranda-Castillo ◽  
Bob Woods ◽  
Kumari Galboda ◽  
Sabu Oomman ◽  
Charles Olojugba ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Unmet Needs ◽  
Support Networks ◽  
People With Dementia ◽  
At Home

scholarly journals Making a university community more dementia friendly through participation in an intergenerational choir

Dementia ◽  
2018 ◽  
Vol 18 (7-8) ◽  
pp. 2556-2575 ◽  
Author(s):  
Phyllis Braudy Harris ◽  
Cynthia Anne Caporella
Keyword(s):  
Quality Of Life ◽  
College Students ◽  
Young Adults ◽  
Focus Group ◽  
Lived Experience ◽  
Family Members ◽  
Social Connections ◽  
The People ◽  
People With Dementia

A dementia friendly community is one that is informed about dementia, respectful and inclusive of people with dementia and their families, provides support, promotes empowerment, and fosters quality of life. This study presents data from four cohorts of undergraduate college students and people with dementia and their family members, using an intergenerational choir as the process through which to begin to create a dementia friendly community. This was accomplished by breaking down the stereotypes and misunderstandings that young adults have about people with dementia, thus allowing their commonalities and the strengths of the people living with dementia to become more visible. Data were gathered for each cohort of students through semi-structured open-ended questions on attitudes about dementia and experiences in the choir, collected at three points over 10 weeks of rehearsals. Data about their experiences in the choir were collected from each cohort of people with dementia and their family members through a focus group. Results across all four cohorts showed in the students: changed attitudes, increased understanding about dementia and the lived experience, reduced dementia stigma, and the development of meaningful social connections. People with dementia and their family members expressed feelings of being part of a community.

Exploring the needs of people with dementia regarding assistive technology to save quality of life and independent living at home

2011 ◽  
Vol 26 (S2) ◽  
pp. 501-501 ◽  
Author(s):  
G. Streffing ◽  
M. Siebers ◽  
E. Gräßel ◽  
U. Schmid
Keyword(s):  
Quality Of Life ◽  
Daily Living ◽  
Independent Living ◽  
Rating Scales ◽  
Sensor Technology ◽  
Motion Sensors ◽  
People With Dementia ◽  
Professional Care ◽  
At Home

Research on assistive home technology (AT) aims to reduce care costs and increase quality of life of people with dementia. Currently it is unclear what the needs of people with dementia are and what kind of support they desire. The reported survey aims to identify personal attitudes towards AT in daily living: As how disturbing is the loss of competence in activities of daily living (ADL) experienced? For which ADLs would AT be accepted? Which kind of sensor technology and interaction devices would be tolerated at home? Interviews with open questions and rating scales were conducted with 53 persons (m = 14, f = 39; aged 19–59). Subjects were professional care givers (n = 23), relatives of people with dementia (n = 15), and persons without dementia background (n = 15). The answers were evaluated statistically. Loosing the ability to take care of own body hygiene was judged as most disturbing. Washing clothes was judged as least disturbing. In general people preferred being helped by family members. However, AT was mostly preferred over professional care. People can best imagine AT help for using the telephone and managing medicine taking. Help by AT is nearly excluded for social relationships and finances. Transponders on objects are accepted best, closely followed by motion sensors. Video sensors are approved least. The PDA is the most accepted shape of AT. When developing AT, it is worthwhile to include potential user groups in decisions about areas of support as well as technical design to increase acceptance.

scholarly journals Motion-Based Technology for People With Dementia Training at Home: Three-Phase Pilot Study Assessing Feasibility and Efficacy

10.2196/19495 ◽  
2020 ◽  
Vol 7 (8) ◽  
pp. e19495
Author(s):  
Jindong Ding Petersen ◽  
Eva Ladekjær Larsen ◽  
Karen la Cour ◽  
Cecilie von Bülow ◽  
Malene Skouboe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Function ◽  
Pilot Study ◽  
Physical Function ◽  
Care Center ◽  
Group Training ◽  
People With Dementia ◽  
High Adherence ◽  
At Home

Background Persons with dementia tend to be vulnerable to mobility challenges and hence face a greater risk of fall and subsequent fractures, morbidity, and mortality. Motion-based technologies (MBTs), also called sensor-based technologies or virtual reality, have the potential for assisting physical exercise and training as a part of a disease management and rehabilitation program, but little is known about its' use for people with dementia. Objective The purpose of this pilot study was to investigate the feasibility and efficacy of MBT physical training at home for people with dementia. Methods A 3-phase pilot study: (1) baseline start-up, (2) 15 weeks of group training at a local care center twice a week, and (3) 12 weeks of group training reduced to once a week, supplemented with individual MBT training twice a week at home. A total of 26 people with dementia from a municipality in Southern Denmark were eligible and agreed to participate in this study. Three withdrew from the study, leaving 23 participants for the final analysis. Feasibility was measured by the percentage of participants who trained with MBT at home, and their completion rate of total scheduled MBT sessions. Efficacy was evaluated by physical function, measured by Sit-to-Stand (STS), Timed-Up-and-Go (TUG), 6-minute Walk Test (6MW), and 10-meter Dual-task Walking Test (10MDW); cognitive function was measured by Mini-Mental State Examination (MMSE) and Neuropsychiatric Inventory-Questionnaire (NPI-Q); and European Quality of Life 5 dimensions questionnaire (EQOL5) was used for measuring quality of life. Descriptive statistics were applied accordingly. Wilcoxon signed-rank and rank-sum tests were applied to explore significant differences within and between the groups. Results As much as 12 of 23 participants (52%) used the supplemental MBT training at home. Among them, 6 (50%) completed 75% or more scheduled sessions, 3 completed 25% or less, and 3 completed between 25% and 75% of scheduled sessions. For physical and cognitive function tests, supplementing with MBT training at home showed a tendency of overall stabilization of scores among the group of participants who actively trained with MBT; especially, the 10MDW test even showed a significant improvement from 9.2 to 7.1 seconds (P=.03). We found no positive effect on EQOL5 tests. Conclusions More than half of the study population with dementia used MBT training at home, and among them, half had an overall high adherence to the home training activity. Physical function tended to remain stable or even improved among high-adherence MBT individuals. We conclude that MBT training at home may be feasible for some individuals with dementia. Further research is warranted.

scholarly journals Motion-Based Technology for People With Dementia Training at Home: Three-Phase Pilot Study Assessing Feasibility and Efficacy (Preprint)

2020 ◽  
Author(s):  
Jindong Ding Petersen ◽  
Eva Ladekjær Larsen ◽  
Karen la Cour ◽  
Cecilie von Bülow ◽  
Malene Skouboe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Function ◽  
Pilot Study ◽  
Physical Function ◽  
Care Center ◽  
Group Training ◽  
People With Dementia ◽  
High Adherence ◽  
At Home

BACKGROUND Persons with dementia tend to be vulnerable to mobility challenges and hence face a greater risk of fall and subsequent fractures, morbidity, and mortality. Motion-based technologies (MBTs), also called sensor-based technologies or virtual reality, have the potential for assisting physical exercise and training as a part of a disease management and rehabilitation program, but little is known about its' use for people with dementia. OBJECTIVE The purpose of this pilot study was to investigate the feasibility and efficacy of MBT physical training at home for people with dementia. METHODS A 3-phase pilot study: (1) baseline start-up, (2) 15 weeks of group training at a local care center twice a week, and (3) 12 weeks of group training reduced to once a week, supplemented with individual MBT training twice a week at home. A total of 26 people with dementia from a municipality in Southern Denmark were eligible and agreed to participate in this study. Three withdrew from the study, leaving 23 participants for the final analysis. Feasibility was measured by the percentage of participants who trained with MBT at home, and their completion rate of total scheduled MBT sessions. Efficacy was evaluated by physical function, measured by Sit-to-Stand (STS), Timed-Up-and-Go (TUG), 6-minute Walk Test (6MW), and 10-meter Dual-task Walking Test (10MDW); cognitive function was measured by Mini-Mental State Examination (MMSE) and Neuropsychiatric Inventory-Questionnaire (NPI-Q); and European Quality of Life 5 dimensions questionnaire (EQOL5) was used for measuring quality of life. Descriptive statistics were applied accordingly. Wilcoxon signed-rank and rank-sum tests were applied to explore significant differences within and between the groups. RESULTS As much as 12 of 23 participants (52%) used the supplemental MBT training at home. Among them, 6 (50%) completed 75% or more scheduled sessions, 3 completed 25% or less, and 3 completed between 25% and 75% of scheduled sessions. For physical and cognitive function tests, supplementing with MBT training at home showed a tendency of overall stabilization of scores among the group of participants who actively trained with MBT; especially, the 10MDW test even showed a significant improvement from 9.2 to 7.1 seconds (<i>P</i>=.03). We found no positive effect on EQOL5 tests. CONCLUSIONS More than half of the study population with dementia used MBT training at home, and among them, half had an overall high adherence to the home training activity. Physical function tended to remain stable or even improved among high-adherence MBT individuals. We conclude that MBT training at home may be feasible for some individuals with dementia. Further research is warranted.

scholarly journals Making Homes More Dementia-Friendly through the Use of Aids and Adaptations

Healthcare ◽  
2019 ◽  
Vol 7 (1) ◽  
pp. 43 ◽  
Author(s):  
Simon Evans ◽  
Sarah Waller ◽  
Jennifer Bray ◽  
Teresa Atkinson
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Family Member ◽  
Cognitive Abilities ◽  
Quantitative Data ◽  
Social Care ◽  
People With Dementia ◽  
Multiple Challenges ◽  
At Home

The majority of people with dementia live in their own homes, often supported by a family member. While this is the preferred option for most, they often face multiple challenges due to a deterioration in their physical and cognitive abilities. This paper reports on a pilot study that aimed to explore the impacts of aids and adaptations on the wellbeing of people with dementia and their families living at home. Quantitative data were collected using established measures of wellbeing at baseline, 3 months and 9 months. In-depth case studies were carried out with a sample of participants. Findings from the pilot suggest that relatively inexpensive aids can contribute towards the maintenance of wellbeing for people with dementia in domestic settings. The project also increased the skills and confidence of professionals involved in the project and strengthened partnerships between the collaborating organisations across health, housing and social care. Providing aids that can help people with dementia to remain living at home with a good quality of life, often with the support of a family member, is an important element in the development of age-friendly communities.

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