Nurses’ experience of caring for people with intellectual disability and dementia

Josephine Cleary and Owen Doody

Aims and objectives. To explore nurses’ experiences of caring for older people with intellectual disability and dementia.

Background. Ageing and dementia prevalence is increasing along with the life expectancy of people with intellectual disability. As a population group, people with intellectual disability have a high prevalence of dementia, which is higher within the subpopulation of Down syndrome. People with intellectual disability live in residential care, community or residential settings, and nurses are required to adapt their practices to meet the changed needs of the individual.

Design. A qualitative Husserlian descriptive phenomenological methodology facilitated the researcher to become absorbed in the quintessence of meaning and explore nurses’ experience of working with older people with intellectual disability and dementia.

Methods. Ethical approval was obtained, and data were collected utilising semistructured interviews (n = 11). Interviews were transcribed and analysed using Colaizzi’s framework for data analysis.

Results. Three key themes were identified: ‘knowledge of dementia’, ‘personcentred care’ and ‘transitioning within the service’. The study highlights the need for proactive planning, life story books of the patient, and funding to support client and staff.

Conclusions. Overall, the study highlights the importance of knowing the person, supporting the individual and recognising presenting behaviours as outside the control of the individual. Relevance to clinical practice. This article presents the experiences of nurses caring for the older person with intellectual disability and dementia. Transitions are often very difficult for both the person and their peers, and they experience benefit from the efforts of a multidisciplinary team facilitating a person-centred approach.

The State of the Science of Health and Wellness for Adults With Intellectual and Developmental Disabilities

Historically, people with intellectual and developmental disabilities (IDD) have experienced health disparities related to several factors including: a lack of access to high quality medical care, inadequate preparation of health care providers to meet their needs, the social determinants of health (e.g., poverty, race and gender), and the failure to include people with IDD in public health efforts and other prevention activities. Over the past decade, a greater effort has been made to both identify and begin to address myriad health disparities experienced by people with IDD through a variety of activities including programs that address health lifestyles and greater attention to the training of health care providers. Gaps in the literature include the lack of intervention trials, replications of successful approaches, and data that allow for better comparisons between people with IDD and without IDD living in the same communities. Implications for future research needed to reduce health disparities for people with IDD include: better monitoring and treatment for chronic conditions common in the general population that are also experienced by people with IDD, an enhanced understanding of how to promote health among those in the IDD population who are aging, addressing the health needs of people with IDD who are not part of the disability service system, developing a better understanding of how to include people with IDD in health and wellness programs, and improving methods for addressing the healthcare needs of members of this group in an efficient and cost-effective manner, either through better access to general medical care or specialized programs.

Source: The State of the Science of Health and Wellness for Adults With Intellectual and Developmental Disabilities

New Issue Brief Available: Opportunities to Improve Nutrition for Older Adults and Reduce Risk of Poor Health Outcomes


http://bit.ly/2mJpAdx

http://nutritionandaging.org/

A new Issue Brief is now available that addresses opportunities to improve nutrition for older adults and also reduce the risk of poor health outcomes. During National Nutrition Month we focus time on the issue of nutrition, because as people age, they may experience malnutrition.  Appetite and the body’s ability to process food may decrease with age, while health conditions and use of medications that can affect nutrition status may increase.  In addition, limited ability to shop for and prepare food can affect a person’s access to it.  Factors like isolation and depression also can affect nutrition.

Self-Directed Care May Help People with Serious Mental Illness Take an Active Role in Their Recovery

Source: National Rehabilitation Information Center | Information for Independence

Serious mental illnesses (SMI) are conditions like schizophrenia, bipolar disorder, or depression. People with serious mental illness often receive traditional mental health services funded by Medicaid, such as medications or psychotherapy. These services may help reduce SMI symptoms, but they may not be effective enough to help people with SMI participate fully in their communities. Self-directed care (SDC) is a new and alternative approach to traditional care for people with SMI. In one version ofSDC, people with SMI can request funding through their provider for nontraditional goods or services that they need to achieve their wellness goals. For example, someone in an SDC program could request funding for a gym membership, a bus pass, or clothes for a job interview. In a recent NIDILRR-funded study, researchers looked at the types of SDC requests people with SMI made while participating in such a program and their reasons for making the requests. The researchers also wanted to find out how often people with SMI requested nontraditional items through SDC, and the most common wellness goals that people with SMI hoped to meet by making those SDC requests.

Researchers at the Rehabilitation Research and Training Center on Community Integration and Participation for Individuals with Psychiatric Disabilities (TU Collaborative) looked at data from 120 participants enrolled in a larger study about SDC. The participants were adults with a SMI (schizophrenia, bipolar disorder, or depression) who were receiving Medicaid-funded mental health services in Delaware County, Pennsylvania. Half of the participants took part in an SDC program and half received usual care. For this study, the researchers focused on the 60 participants who were offered the SDC program. The SDC program participants were paired with a recovery coach who explained the program and helped them set personalized wellness goals. The coach also reviewed the participants’ current mental health services with them and encouraged them to decide whether or not they were satisfied with their current services and whether or not they wanted to request any nontraditional goods or services. The participants who decided to request a nontraditional item submitted a written justification explaining how the requested item would help them achieve specific wellness goals. The participants also submitted the estimated costs to the behavioral health managed care agency for approval. All of the SDC requests were approved. After approval, the participants were given debit cards to purchase their requested items.

The researchers looked at how many participants requested nontraditional items, how many requests they made, how long it took to make their first request, and what types of items were most often requested and the wellness goals those items addressed. The researchers found that:

  • Almost all SDC participants (87%) requested at least one item, with an average of about 10 items requested per person.
  • On average, it took the participants about 3 months to make their first request after they joined the SDC program.
  • Participants made requests to improve broad wellness goals in diverse areas including: Self-Care; Domestic Life; Mobility; and Community, Civic, and Social Life.
  • The most common specific wellness goals that SDC requests addressed were: managing diet and fitness, using public transportation, and handling stress. Most of the participants made requests related to more than one wellness goal.
  • The participants with schizophrenia requested more items related to managing their health and fitness, such as gym memberships. The participants with bipolar disorder and depression made more requests related to reducing stress, such as paying the electric bill or legal fees related to a divorce.

The authors noted that traditional, medically-oriented mental health services may not fully meet the individual needs of people with SMI. Traditional care may also put people with SMI in a passive role regarding their care. This approach to SDC can give people with SMI a more active role in their recovery by letting them identify and request the goods and services that they feel would be most relevant to their personal wellness. SDC may also help people with SMI overcome financial barriers, such as the inability to pay for a bus pass, which might prevent them from fully participating in valued activities like employment and social gatherings. The ability to participate in meaningful activities, in the long run, may beneficially impact overall health and wellbeing. It may be beneficial for behavioral health agencies and policymakers to broaden the definition of “medical necessity” to include nonmedical goods and services that individuals with SMI feel are important for achieving wellness goals. This study did not test the effectiveness of SDC; it just looked at the types and number of requests that people made. Also, the SDC program was new, and the types and number of requests could change as the program matures.  More research is needed to evaluate the long-term impact of an SDC approach to mental health services.

To Learn More

The TU Collaborative website features several resources on self-directed care including factsheet, a guide to creating self-directed care programming, and a self-advocacy planning tools.

The NIDILRR/SAMHSA-funded Center on Integrated Health Care and Self-Directed Recovery is dedicated to advancing knowledge and utilization of innovative models to promote health, recovery, and employment among people with mental health conditions. The Center’s website features resources for practitioners, policymakers, and self-advocates interested in SDC.

To Learn More About this Study

Snethen, G., Bilger, A, Maula, E.C., Salzer, M.S. (2016) Exploring personal medicine as part of self-directed care: Expanding perspectives on medical necessity. Psychiatric Services In Advance, 2016, 1-7. This document is available from the NARIC Collection under Accession Number J74076.

Date published:

2017-03-15

Kessler Foundation Signature Employment Grants

Kessler Foundation

Signature Employment Grants yearly to support  non-traditional solutions  that increase employment outcomes for individuals with disabilities.

Our success is in stimulating ideas from the field that spark new models that are adaptable to replication and scalability, and may be models for policy change. Kessler Foundation’s flexible funding dollars encourage organizations to pursue promising approaches and concepts beyond what they might have done without our support.

What We Fund  Signature Employment Grants are awarded nationally to fund new pilot initiatives, demonstration projects, or social ventures that lead to the generation of new ideas to solve the high unemployment and underemployment of individuals with disabilities. Preference is given for interventions that overcome specific employment barriers related to long-term dependence on public assistance or advance competitive employment in a cost-effective manner.

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Disability and Rehabilitation Research Projects (DRRP) Program: Center on Knowledge Translation for Disability and Rehabilitation Research

Deadline: May 9, 2017
Award Ceiling: $750,000
DRRP: Knowledge Translation

The purpose of NIDILRR’s Disability and Rehabilitation Research Projects (DRRP) which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to plan and conduct research, demonstration projects, training, and related activities, including international activities, to develop methods, procedures, and rehabilitation technology that maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities, especially individuals with the most severe disabilities, and to improve the effectiveness of services authorized under the Rehabilitation Act of 1973, as amended (Rehabilitation Act). Under this particular DRRP priority, applicants must propose activities aimed to 1) add new knowledge in the area of knowledge translation, 2) promote the use of NIDILRR-funded work that is relevant to the needs of intended audiences; and 3) support the knowledge translation endeavors of NIDILRR grantees and other NIDILRR-funded knowledge translation centers.

 

Reaching People in Multiple Languages

Source: Reaching People in Multiple Languages

The National Institute on Minority Health and Health Disparities (NIMHD) envisions an America in which all populations will have an equal opportunity to live long, healthy, and productive lives. NIMHD is committed to supporting research and communications efforts to improve cultural competency and health literacy. We offer this portal as a resource to our stakeholders who work with health disparity populations with limited English proficiency (LEP) to help improve language access to health information produced by NIH and other federal agencies.

How NIMHD Plans to Reach People in Multiple Languages

Dr. Pérez-Stable: Bridging Health Gaps through Language Access

Health Information in Multiple Languages

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Civic Engagement Toolbox For Self-Advocates | Autistic Self Advocacy Network

Right now, many people are getting involved in political advocacy for the first time. People are going to town hall meetings and making phone calls to their members of Congress. They’re writing letters and using social media to organize advocacy groups.This new wave of political advocacy is incredible. And people with disabilities need to be a part of that. That’s why we’re pleased to announce a new series of plain language toolkits. These toolkits focus on the basics of civic engagement. Civic engagement means actively participating in our democracy. In a democracy, regular people choose, or elect, who gets to be in government. The people we elect should listen to our concerns and advocate for us in the government. But when they don’t do that, we have the right to make our voices heard. In short, civic engagement means:learning about how the government works, andmaking sure that the people we elect to government listen to us.They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected OfficialsThe first toolkit is “They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected Officials.” This toolkit is about:who our elected officials are, andwhat strategies self-advocates can use to get our voices heard by the people we elect to represent us.They Work For Us covers:Who our elected officials areHow to contact your elected officialsStrategies, scripts, and templates to help you effectively communicate with your elected officialsHow to use social media for political advocacySome parts of the toolkit are available as short stand-alone fact sheets. Click the links below to download the toolkit and fact sheets as PDF files. The PDFs are screenreader-accessible.They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected OfficialsFact Sheet: How to Call Your Elected OfficialsFact Sheet: In-Person Meetings with Elected OfficialsFact Sheet: Sending Elected Officials Emails, Letters, and Faxes

Source: Civic Engagement Toolbox For Self-Advocates | Autistic Self Advocacy Network

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