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Intimate and social relationships are important for older adults in assisted living
In a study examining the intimate and social relationships of married and unmarried couples in assisted living, researchers found benefits of late-life couplehood included companionship, support and affection.
"It makes a huge difference in the quality of life and the day-to-day life experience to have that intimate connection with somebody else".
In a study examining the intimate and social relationships of married and unmarried couples in assisted living, researchers found benefits of late-life couplehood included companionship, support and affection. However, there were some detrimental outcomes, such as feeling the burden of caregiving, feeling defined by one's spouse and having limited choices.
The study also showed the importance of social relationships. While many assume couples have each other and don't need or want external relationships, the frailty of participants in this study and the range of marital quality showed coupled residents could not always rely on their intimate partners for support. Fellow residents may prove to be important confidantes, companions and friends to coupled residents in assisted living, and they can help shield against negative health outcomes associated with marital transitions, such as when a spouse is ill or dies.
The findings, published in the journal The Gerontologist, demonstrate the complexity and range of later-life couples' intimate and social lives.
"These are important relationships and to the extent that they can be supported have really significant implications for well-being and quality of life for older adults," said Dr. Candace Kemp, associate professor in the Gerontology Institute and Department of Sociology at Georgia State University. "In some cases, particularly with the married couples, these are marriages that are 60 and 70 years in the making, and to separate people and not facilitate them aging in place together can be problematic."
For instance, couples usually don't experience health declines at the same rate. If a husband or wife suffers from cognitive impairment, the assisted-living facility might suggest moving the person to a dementia care unit and leaving his or her spouse on the assisted-living side, which separates the couple, Kemp said.
"I think doing work in this setting is important," Kemp said, "and it's quite possible with people living longer that there will be more couples in these situations, whether they're married or unmarried. We certainly know very little about unmarried couples in later life."
Intimate relationships have a profound effect on older adults' health, well-being and daily lives, but research has not explored the complexity of later-life couples' daily lives and experiences, particularly in the contexts of advanced age, health decline and long-term care settings such as assisted living. Older adults typically move to assisted living because of health decline, shifting dependence patterns and an inability or reluctance to maintain their former residence. Couples are now a minority in assisted living, but they may become more common as the population ages.
"The nice thing about these communal settings is there are a lot of widowed, divorced and never married people, and there is potentially opportunity to develop relationships," Kemp said. "It makes a huge difference in the quality of life and the day-to-day life experience to have that intimate connection with somebody else. These were probably unexpected relationships for the unmarried couples, but very fulfilling relationships for those who manage to find a partner."
Through participant observation and informal interviews, the researchers collected data for one year on 29 couples (26 married and three unmarried) in eight diverse assisted-living facilities in Georgia. The 26 married couples were in long-term relationships, while the three unmarried couples met in assisted living, which shows intimate relationships can develop late in life and in assisted living. The small number of couples in the study is attributed to high impairment levels and gender imbalance in assisted living.
Despite the benefits of late-life couplehood in assisted living, some of the downfalls included the potential for other partners, induced jealousy and marital infidelity. Unmarried couples, particularly women, were gossiped about, indicating different cultural norms apply to older men and women and married and unmarried couples.
The researchers recommend strategies to support couples in assisted living should focus on individual needs and shared needs as a couple, particularly as couples experience physical and cognitive decline over time.
"There are some scenarios, particularly if the caregiving spouse is doing so much work and worrying so much, that they can compromise their health by trying to do more than they're able to do," Kemp said. "I think it's finding that balance between what's best for both the individual and the couple and sometimes those are in conflict."
Love and disability: Why are there so many prejudices?
Whether with or without a disability, whether homo or hetero sexual - for many people love plays an important role in life.
Things quickly get difficult when people want to claim this basic need, for instance, in their search for a partner: many people without disabilities have prejudices they have a hard time overcoming. Oftentimes they assume that people with disabilities are too needy in a relationship and that sexuality is an aspect that is tough or even impossible to experience with them. That’s why people with disabilities are quickly being eliminated as potential partners. An experience also shared by Anton K.*: "Prior to my current relationship, I have searched for a partner for years online. But every time I mentioned my disability, women broke off all contact."
Carina S.* had similar experiences. Like many other people, she occasionally fell in love and sometimes was rejected of course. "It was important for me to always distinguish between a rejection because of me being in a wheelchair and a simple rejection for all kinds of other reasons," explains the Austrian, who has intentionally lived for years without the desire to be in a relationship. "Having said that, I have learned that all potential partners were obviously and rightly afraid of my wheelchair or my disability. And how would they actually know how everything works? I always knew that I needed to take the first step and put their minds at ease – with words and deeds."
But even people who have a disability don’t automatically consider a partner with a disability. "I have met many men who were born with a disability," says Claudia G.*, who has a walking impairment and uses a wheelchair. "Oftentimes, these men seemed very dependent and wallowed in self-pity. I didn’t find that at all attractive! That said a disability is not automatically a deal breaker for me!" Maria E.* who has autism also describes how she is currently not able to envision being in a relationship with a person who has the same disability. "I need someone, who compensates for the parts that I am missing. Someone, who gets along well with other people or isn’t easily stressed out and overwhelmed. Having said that, another disability, for instance, a physical one, does not matter to me."
"This might sound crazy but I cannot imagine having a partner with a (visible) disability," admits Denise H. "This is something I simply couldn’t get into. I would be afraid of being judged by society stating things like, 'It’s great that people with disabilities keep to themselves' and criticism like, 'How can people be so irresponsible and have children if they both have a disability. Who is going to take care of them...' – that would be too much of an emotional burden to me."
Does that sound harsh? But it’s often the reality! After all, people on the outside often assume that partners without disabilities make lots of compromises or people don’t understand why somebody would get involved with a person with disabilities in the first place.
That’s something Claudia G.* is also able to confirm: "People really ask questions like 'Do you think he truly loves you? Don’t you think he is just with you out of pity?". Partners have to put up with these and similar comments time and again."
Jan T., who has spasticity has made similar experiences. "My partner who has no disability first had to learn what it’s like to walk through town with me and deal with the looks people give you. Insults like 'Come on, we’ll take care of you. This spaz can’t give it to you' cut deep."
Of course, these types of reactions by outside entities don’t keep people from falling in love if they are generally open to diversity in all areas of life. Needless to say, whether a person has a disability or not doesn’t automatically impart anything about the actual person or his/her character.
"I hope to soon find someone who takes me as I am. That is, open, honest, sometimes a bit loud, sometimes quiet and I also happen to have a disability," says Vanessa R.* "Since I grew up with my disability, it is a part of me just like the color of my eyes. And I believe that just like the color of one’s eyes, a disability should also not be the focal point when you choose a partner. Unfortunately, however, this seems to be a utopian concept so far."
Having said that, the results of a survey of people with different types of disabilities that forms the basis of this article clearly showed that there is hope. Sadly, there are also those who – in their own words – have never been in a relationship because of their disability. But there are also many who have been in a happy relationship for many years and who also had some positive experiences prior to that. The survey included bisexual people and those who live an aromantic life and are happy. Many respondents fluctuate somewhere between disappointments and the hope of soon finding love. Other have already found it. A small representation that permits a glance at the big picture: love comes and goes – whether you have or don’t have a disability.
For some people with disabilities it is more important than for others whether the partner also has a disability him- or herself.
Intelligent mobility assistants support the elderly
Obstacles such as cobblestone streets, sloping paths or other barriers make the lives of senior citizens difficult. The more restricted they are in their mobility, the less they dare to do things. Then they often avoid going to their favorite park at the corner. The Assistants for Safe Mobility (ASSAM) project has addressed these barriers and created intelligent solutions for walkers, wheelchairs and adult three-wheelers.
In this interview with Rehacare and Posted by Top Mobility, Prof. Bernd Krieg-Brückner from Bremen Ambient Assisted Living Lab at German Research Center for Artificial Intelligence explains how small technical components are not only able to make everyday life easier but also contribute to increasing mobility.
Prof. Krieg-Brückner, what does ASSAM stand for and what are the goals of the project?
Prof. Bernd Krieg-Brückner: Within the EU context, the project was operated under the name "Assistants for Safe Mobility". Our aim is to make a number of technologies available that compensate for age-related restrictions on individual users and are easy to handle.
Fifteen years ago, we already started to develop autonomous wheelchairs. We gradually transferred this technology to other devices. This includes a rolling walker that assists the user to find his/her way with the help of a navigation assistant, an electric scooter that brakes on slopes and powers up a hill, and a rolling walker or wheelchair that automatically avoids obstacles.
Who participated in the project?
Krieg-Brückner: Our consortium includes nine partners from three different countries – Germany, Spain, and the Netherlands. It is made up of both industry and research partners, that being universities. We also had partners who were in charge of evaluations within the scope of field studies. In Germany, this was the Johanniter Association (St. John Association) here in Bremen, in the Netherlands a foundation that supports persons with visual impairments and in Spain an organization that conducts care classifications for senior citizens and recommends equipment.
What mobility assistants does the project particularly focus on?
Krieg-Brückner: We focus on three mobility aids: a wheelchair, a rolling walker and a three-wheeler which we newly designed. All of them promote everyday mobility so that the users don’t have to miss out on their usual social contacts and are also able to enjoy better health.
What are the special characteristics of the individual mobility components?
Krieg-Brückner: Not all components are ready for the market and still need to be further developed in follow-up projects. This is very important to us.
A scooter with electric powered rear wheels for inclines or driving downhill has a great chance in the market. We also developed a navigation assistance system for this scooter that helps to avoid obstacles. This assistance is perfectly suited for visually impaired persons.
The previously mentioned three-wheeler can be purchased in Spain. We also equipped a wheelchair with a driving assistant that is geared for indoor use. Intended objects in charted interior spaces are autonomously targeted with voice command. With the help of laser scanners, the assistant automatically drives around obstacles or stops at a bed in a predetermined direction for instance. All of this was tested here at the Ambient Assistant Living Lab in Bremen in a specifically furnished 60 square meter (645 square foot) apartment.
For use outside, we mounted an additional laser scanner in a tilted position behind the user’s head. It is able to detect obstacles, potholes, ditches or barriers, for instance, in a three-dimensional perspective. Other than that, the laser scanner is only configured to avoid obstacles up to ten centimeters in height. This is sufficient for typical homes. The wheelchair is also able to automatically back up and maneuver through narrow doorways.
The St. John Accident Assistance ("Johanniter Unfall-Hilfe") has tested the assistance components in everyday situations. What insights were you able to gain from these field studies?
Krieg-Brückner: One basic insight we gained from the project and initially underestimated is to pay close attention to the test subjects in terms of their individual skills and needs. Ultimately, our equipment is adapted to this and adjusted with a corresponding configuration. It is primarily necessary to train the caregivers and test persons so they are able to accurately assess the equipment options. Based on its laser scanner technology, for instance, the wheelchair does not detect any obstacles made of glass. If the surroundings are not set up or charter for this, the test persons and caregivers need to adapt to these subtleties and personally intervene if necessary.
EU funding for this research project expired in 2015. Now it’s important to not drop the ball. How is the interest in Germany?
Krieg-Brückner: The interest increases with the name recognition of the equipment of course. The German market is still emerging for the three-wheeler. Interest in mobility assistance is especially high for the electric power scooter. We are currently in negotiations with a well-known rollator company.
The main problem with wheelchairs is that the market becomes smaller with increasing disability levels. Unfortunately, this is also why the willingness to actually go the distance to a market launch is also dwindling. Yet we are still optimistic in this case since we keep using increasingly cost-efficient components as the technology advances.
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Accessible traveling: What does the industry sector offer?
It’s all about the destination – usually, choosing the vacation spot comes first, at least when it comes to travel. You gather information at a travel bureau or on the Internet and make a decision. Then you book a reservation, plan and pack your suitcases and let the vacation begin. But can people with disabilities also do things just like that? Does the tourism industry pay attention to their needs as guests?
Not only booking or the hotel, but also the surrounding areas on site should be accessible. Basically, everything already starts by choosing your travel destination: are the accommodations and surroundings accessible? What region or country is generally well suited for people with disabilities? Several cities often provide only a limited amount of good information online. At the Hamburg Tourism homepage, for instance, interested visitors are actually able to find a large variety of detailed information about the surroundings and choices on location. There are more and more available enterprise information portals especially in the German-speaking realm that try to combine information pertaining to certain areas and provide tips if needed.
Once you have finally decided on a destination, you need to book your vacation. Aside from dedicated travel agencies that are specialized in people with disabilities, there is obviously also the option of booking online. However, the problem here is that it is often not immediately apparent whether a hotel offers accessible rooms and how they are equipped. Quite often, the online reservation needs to be followed up with a call to clarify the specifics. When it comes to accessibility for the disabled, the focus tends to be exclusively on people with restricted mobility. The needs of visually impaired, blind or deaf persons are often neglected. That’s also why shampoo bottles with Braille, for example, are so far more of an exception in hotel rooms.
But before you arrive at the hotel, you need to find a way to get there first. Here, too, the accessibility focus is often exclusively on the needs of wheelchair users. At the beginning of the year, the Miami International Airport has launched the MIAair program. It is designed to ensure that both autistic and hearing-impaired passengers enjoy their flights. Detailed descriptions and flyers explain every step special needs passengers can expect at the airport. The goal is to make these future passengers feel as safe as possible. And although these measures are certainly not able to take away all of their fears, they are at least a step in the right direction. Tourism industry needs to rethink its business The fact that the subject of "accessible tourism" is still not a matter of course in the industry sector, was already evident in two examples in 2016: at the CMT Travel and Tourism Trade Fair in January, the Center for Living a Self-Determined Life ("Zentrum selbstbestimmt Leben"), ZsL Stuttgart, was the only booth that was explicitly dedicated to this subject. The subject was virtually not represented at the International Travel Trade Show ITB. Hardly any exhibitors were able to provide information on accessible travel offers, reported one wheelchair user who avidly enjoys traveling and explicitly kept asking for information at various booths.
The Accessible Tourism Day also took place during the ITB but was located far away from the actual trade events and therefore difficult to find. So if you didn’t know about it or specifically looked for it, you most likely didn’t encounter the subject. And yet this would be quite important, especially given the current situation. "The industry sector needs to realize that it loses valuable guests if it does not address their needs," said Francesc Aragall during the panel discussion. "This applies both when you don’t cater to vegetarian guests, for example, andif you ignore accessibility issues."
Dr. Rüdiger Leidner, Chairman of Natko, is also convinced, "There is still lots to do." Aside from the industry sector itself, he also sees the responsibility with another entity. "The government needs to be responsible for the reliability and designation of accessible services and offers; and preferably at a cross-national and uniform level." He also demanded that public project sponsorships pertaining to this issue should only be approved if they explicitly include accessibility aspects.
In any case, the various experts at the panel discussion on the Accessible Tourism Day in March all agreed: generally, the entire tourism service supply chain should be covered. Everything, from transportation to accommodation all the way to activities on location needs to be accessible for a variety of guests. At the end of the day, Ursula Wallbrecher, herself a wheelchair user and point person for accessibility issues at the State Museum, Mainz, summed up perfectly what an accessible travel experience should ideally look like: getting there, getting in and getting around.
Beach wheelchairs are only one way to meet the needs of guests with disabilities.
