The demands of family caregivers of elderly individuals with dementia

The purpose of this cross-sectional observational study was to identify characteristics of caregivers of elderly people with dementia, types of care demands and to relate demands to the stage of dementia. The study was carried out in 2004 with 104 older adults and 90 caregivers in Ribeir?o Preto, state of S?o Paulo. The OARS instrument was utilized and a questionnaire answered by caregivers. Among older adults, 66.3% were female, aged 75.5 years in average and 86.5% had caregivers. Eighty percent of the caregivers were women family members, aged 52.3 years in average. They spent 15.10 hours/day with care, without help. An important relationship was observed between caregiver's burden, physical and emotional effort and stage of dementia. Emotional overburden was higher at dementia early and late stages, this difference was statistically non-significant. Results reveal the urgent need to plan formal and informal support strategies to caregivers of Brazilian elderly people with dementia.     

Benefits of a poetry writing intervention for family caregivers of elders with dementia

This pilot clinical trial tested effectiveness of a poetry writing intervention for family caregivers of elders with dementia. This paper presents findings from a larger study using mixed methods to examine outcome variables of self-transcendence, resilience, depressive symptoms, and subjective caregiver burden. Findings reported here focus on qualitative analysis of in-depth interviews conducted with participants following their poetry writing experience. A grounded theory approach was used. Themes that arose from the data support a mid-range theory of self-affirmation in caregivers with subthemes of achievement, catharsis, greater acceptance, empathy, self-awareness, reflection, creative and fun, positive challenge, and helping others.     

Preserving personhood of individuals with advanced dementia: Lessons from family caregivers

This article reports on a phenomenological study of 15 family caregivers who admitted their spouse or parent with probable Alzheimer's disease to long-term care. The caregivers were attuned to the needs, desires, moods and concerns of their family members with dementia; thus, they were attuned to personhood. Caregivers also reported observations of care by nurses and nursing staff. Observations were of individualized care and actions that promoted personhood and impoverished care delivered with minimal or no communication. These family caregivers' perspectives can inform the care of individuals with advanced dementia by nurses and nursing staff.     

Home-based music strategies with individuals who have dementia and their family caregivers

The purpose of this exploratory study was to test a caregiver-administered music program with family members who have dementia. The music protocol was designed to reduce distress and enhance satisfaction with caregiving, while offering the person with dementia the potential to improve mood and psychological state. Fourteen elders with dementia and their family caregivers were recruited, and 8 completed the protocol. Both caregivers and care recipients improved self-reported relaxation, comfort, and happiness, when mean scores were compared between baseline and music conditions. Caregivers showed the most benefit. While drop-out was high (6 families dropped), and caregiving satisfaction failed to improve over time, caregivers expressed enjoyment in reminiscing and participating in musical activities with their loved ones. More direct intervention by a music therapist is recommended to improve impact.     

A nursing intervention to decrease depression in family caregivers of persons with dementia

The goal of this study was to evaluate a community-based psychoeducational-nursing intervention designed to teach home caregivers to manage behavioral problems of persons with Alzheimer's disease and related dementias (ADRD) using the Progressively Lowered Stress Threshold (PLST) model, and to compare this intervention with routine information and referrals for case management, community-based services, and support groups. Previous caregiver studies have overwhelmingly pointed to the adverse effects of caregiving on the caregivers' physical and mental health, and high prevalence rates of depression among caregivers of persons with ADRD have consistently been reported. Therefore, a primary aim was to evaluate the impact of the intervention on caregivers' affective responses, especially depression. Data from both the Profile of Moods States and the Geriatric Depression Rating Scale support the effectiveness of this intervention in decreasing depression among caregivers who received the experimental training. Additional analysis of factors associated with caregiver depression are also reported. The pivotal role of psychiatric nurses in the assessment and treatment of depression among caregivers of persons with ADRD is discussed.     

Access to health care resources for family caregivers of elderly persons with dementia

Concerns about the "elder care crisis" and changes in the provision of health care are fostering expectations that families should be responsible for taking care of their elderly members. The assumptions that families (1) are not providing enough care, (2) know how to provide care, and (3) have access to resources for the provision of care are embedded in the social expectation of family care for elderly persons with dementia. However, research shows that these assumptions are not based on fact.     

Australian caregivers of family members with dementia

This study of Australian caregivers revealed that sufferers of dementia were men and women who were cared for mainly by their spouses. A small group of caregivers had little or no personal physical and emotional support from others. Changes in health status related to the caregiving role was reported by 83% of the caregivers. There is a clear need to provide physical and emotional support for caregivers generally and for those with little or no support in particular.     

Cognitive-behavioral intervention for homebound caregivers of persons with dementia.

BACKGROUND: Family caregivers experience considerable stress in their management of specific behaviors of persons with dementia. OBJECTIVE: To examine the effects of an 8-week cognitive-behavioral (C-B) intervention tailored to the specific deficits of persons with dementia (PWDs) on selected outcomes for homebound caregivers and the functional status of the PWD. METHOD: The design was a two-group randomized trial with measures taken at baseline, 4 weeks, 8 weeks, and 12 weeks. Subjects were 65 caregiver-care recipient dyads. A majority of the 65 female caregivers were spouses with a mean age of 66.5 years. Thirty-one women who received the C-B intervention were compared to 34 who received the attention-only (A-O) placebo telephone calls. Coping strategies, perceptions of caregiver burden and satisfaction, and emotional and physical health were assessed at the four points in time. RESULTS: Results indicated a time by group interaction in depression, with less depression in the C-B than the A-O group. Both groups experienced a significant reduction in anxiety, and a significant consistent decrease in satisfaction over time. Both groups also demonstrated decreased use of emotion-focused coping strategies. CONCLUSION: The results suggest a plausible effectiveness of the C-B intervention in preventing the progression of depression. Suggestions for future research are provided.     

Outcomes of interventions for Alzheimer's family caregivers in Mexico

The study examines which of three interventions of cognitive conduct, laughter, or a mixed intervention including both cognitive conduct and laughter components, is more effective for improvement of attitudes toward care and reduction of anxiety among female Mexican caregivers of family members with Alzheimer's disease. A repeated measures quasi-experimental design with four groups, three experimental and a control group, was used. All intervention groups received cognitive conduct, laughter, or a mixed intervention weekly for 8 weeks. The control group received information about home accident prevention. Outcome measurements were performed at baseline, Week 4, end of the intervention (Week 8), and 4 weeks following the intervention completion. A repeated measures ANOVA was used for each outcome variable and the Tukey's post hoc analysis to determine group differences. Results suggest that the cognitive conduct component significantly improved positive attitudes toward care and reduced anxiety both at the end of the intervention and at follow-up.     

Tactile stimulation associated with nursing care to individuals with dementia showing aggressive or restless tendencies: an intervention study in dementia care

Aim.  This study aimed to describe from documentation both the caregivers' experiences of giving tactile stimulation to five people with moderate-to-severe dementia and who showed aggressive or restless tendencies, and the changes seen in them.
Background.  Clinical experiences indicate that tactile stimulation can contribute to a feeling of trust and confirmation as well as to improving communication, promoting relaxation and easing pain. There is, however, very little scientific documentation of the effects of touch massage for people with dementia.
Design.  From caregivers' documentation (28 weeks) of experiences, the giving of tactile stimulation to five randomly selected people with dementia showing aggressive or restless tendencies and the subsequent changes noticed.
Method.  The documentation was analysed by using qualitative content analysis.
Results.  All residents displayed signs of positive feelings and relaxation. The caregivers stated that they felt able to interact with the residents in a more positive way and that they felt they had a warmer relationship with them.
Conclusion.  Tactile stimulation can be seen as a valuable way to communicating non-verbally, of giving feedback, confirmation, consolation or a feeling of being valuable and taken care of.
Relevance to clinical practice.  Tactile stimulation has to be administered with respect and care, and given from a relational ethics perspective. Otherwise, there is a risk that tactile stimulation will be used merely as a technique instead of as a part of an effort to achieve optimal good, warm nursing care.     

Use of day centers for respite by help-seeking caregivers of individuals with dementia

Addressing the use of respite services by caregivers of individuals with dementia is important to improving social support among this vulnerable group. This article uses theory to conceptualize the behavioral, normative, and control beliefs that caregivers of individuals with dementia associate with the use of out-of-home day centers for respite. Interviews and focus groups with 36 caregivers were conducted to explore the beliefs of both users and nonusers of these services. While service users held positive beliefs, nonusers perceived negative outcomes for the care recipient with dementia or faced barriers associated with the recipient's behavioral or physical needs. To address negative perceptions, nurses may need to promote the benefits of day centers for both caregivers and care recipients. However, improvements in program activities and environments, staff development, and caregiver support are also required to address negative beliefs and meet the needs of those currently not accessing care.     

Developing a social capital scale for family caregivers of people with dementia

Although several scales have been designed to measure social capital, none have been specialized for caregivers of people with dementia, even though social capital is important in terms of continuing care provision. Therefore, we developed and validated a 17-item measure to assess social capital among caregivers of people with dementia. We assessed psychometric properties using responses from a questionnaire survey that included a draft of a social capital scale. Factor analysis identified three factors involving 17 items with a Cronbach's alpha of .85. The intra-class coefficient for test–retest reliability was .71. The correlation with positive aspects of caregiving was .62 (p < .01). The results suggest that our scale could be a useful tool to assess social capital among caregivers of people with dementia.     

The lived experience of spiritual well-being amongst family caregivers of persons with dementia on palliative care

Family caregivers of persons with dementia are known to experience caregiver burden, anxiety, and social isolation. Spiritual well-being may help ameliorate these characteristics. The meaning of this phenomenon, though, is not known to have been explored previously within this caregiving population. This hermeneutic phenomenological study examined the lived experiences of spiritual well-being in 10 family caregivers. The analysis of semi-structured interviews revealed 5 prominent themes: being connected, strength, presence, hardships, and duty. Phenomenological writing revealed the essence of spiritual well-being in the context of this study. This understanding will help nurses appreciate the importance some family caregivers place on spirituality and recognize when a family caregiver may benefit from a spiritual guidance referral. Further research is recommended to examine associations between spiritual well-being and burden, depression, and social isolation in caregivers of persons with dementia at different stages of receiving palliative care.     

Barriers and facilitators in the use of formal dementia care for dementia sufferers: A qualitative study with Chinese family caregivers in Hong Kong

Understanding the barriers and facilitators in the use of formal dementia care for dementia sufferers is crucial. However, such studies have largely been conducted in Western countries, and current evidence is not fully applicable to Asian societies. This qualitative enquiry aims to identify the barriers and facilitators for family caregivers of persons with dementia (PwDs) to use relevant services at communities in Hong Kong. Semi-structured face-to-face interviews with 15 PwDs were conducted in three elderly care centres. The content analysis of transcribed audiotaped interviews revealed various barriers related to financial support, service availability and accessibility, life burden, and referral, and facilitators about family responsibility, perceived benefits, and caring relations. The culture rooted in Confucianism with a British melioration may play an important role in shaping PwDs’ experiences in the use of dementia services in Hong Kong. Cultural sensitive services could be attempted to attract more PwDs to utilise them.     

Trajectories of health-related quality of life among family caregivers of individuals with dementia: A home-based caregiver-training program matters

To determine distinct courses of change in health-related quality of life (HRQoL) among family caregivers of individuals with dementia and how participating in a home-based caregiver-training program affects the probability of belonging to each course. Sixty three caregivers were in the intervention group, and 66 caregivers were in the control group of a single-blinded randomized clinical trial. Two distinct trajectories of HRQoL were identified: a well-functioning trajectory and a poor-functioning trajectory. Caregivers who received the training program were more likely than those who did not have a well-functioning trajectory of HRQoL over 18 months. This trajectory included bodily pain (b = 1.02, odds ratio [OR] = 2.76), general health perception (b = 1.28, OR = 3.60), social functioning (b = 1.12, OR = 3.05), vitality (b = 1.51, OR = 4.49), general mental health (b = 1.08, OR = 2.94), and mental component summary (b = 1.27, OR = 3.55). Home-based caregiver training can be considered as part of the protocol for managing patients with dementia and their caregivers.Trial registration number: NCT02667951.