Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities
The Role of DSPs in the Lives of Aging Adults with Intellectual and Developmental Disabilities
As more people with intellectual and developmental disabilities are living longer, Direct Support Professionals (DSPs) need to have the knowledge and skills to support them as they age. The guiding principles of person-centered services, individual empowerment, and valuing natural connections and relationships in the community reflect DSP best practices. These principles should continue to guide DSPs as they respond to the unique needs of individuals with disabilities in later life years. Within this framework, DSPs will need to be knowledgeable about the following five aging-related areas: (1) awareness of physical and mental health changes, (2) supporting aging in place, (3) retirement and later-life social networking, (4) grieving and loss, and (5) end-of-life planning. While each of these critical areas could be the subject of an entire article, below is a brief description of each and suggested steps DSPs can take to improve the quality of support they provide to older adults.
Changes in Physical and Mental Health
As individuals with intellectual and developmental disabilities age, increasing health problems and functional limitations occur. Changes in physical health and mental functioning that are part of the normal aging process begin in the mid-50s for the general population. However, people with intellectual and developmental disabilities often experience those changes earlier than people without disabilities. It is important for DSPs to learn about the aging process in relation to the individuals they support, and actively assist their healthy aging. This includes identifying early signs of physical or mental decline, and facilitating access to health care services. Some specific support strategies for DSPs to use include the following:
- Assist the person receiving support to remain as physically and mentally active as possible. Inactivity can contribute to increased health complications. Many people with intellectual disabilities are at a greater risk than the general population for degenerative diseases. Direct Support Professionals can help slow the decline caused by these diseases and general aging by supporting individuals to maintain active lifestyles. Ways to do this include involving the person as much as possible in everyday living tasks such as shopping, cleaning activities, and setting the table; and assist the person to be involved in community activities that promote healthy aging, such as walking groups, low-impact exercise classes, gardening, and other physical and social activities of a person's choice.
- Educate the person you support about maintaining his or her health. Share information in a way that the person understands. Explain why it is important to stay active, and remember, keep it fun to be active!
- Identify early signs of physical or mental decline. Is the person you are supporting acting differently than usual? Is he or she reacting to specific stimuli differently than in the past? These can be indicators of changes in physical or mental functioning. Keep detailed records of the changes you notice, as well as any changes in support you are providing. Share this information with the appropriate health care professionals.
- Learn the signs and symptoms of depression, and be aware of other types of mental health concerns for which a person may be at increased risk due to health history, hereditary factors or medication. Grief and loss can also be contributing factors in mental health of aging individuals.
- Support healthy eating. Understand changes in diet that may be needed as a person grows older. Be observant! Changes in a person's preferences may indicate difficulty in chewing and digesting food, sensory changes affecting the sense of smell and taste, or other health related concerns. Being responsive and encouraging person-centered planning to adapt to these changes is essential.
Supporting Aging in Place
Growing old in one's own home as independently as possible is a common goal of most people. This goal is often difficult to attain for people with disabilities. Both people living with their families and those who live in congregate settings can face barriers to remaining in their homes in their later life years, including service structures, policies, and funding. As a person becomes older and experiences decreased functional skills, he or she may be moved to a home with other people who have similar functional support needs. This is often a more restrictive environment. DSPs can play an important role in helping people to live in their own homes as long as possible through these strategies:
- Make environmental adaptations to reduce the risk of falls and accidents, and make the environment more user-friendly. Can handrails or guardrails be installed? Have area rugs been removed? Does the person need additional lighting to see well? Would it be helpful to have phones and clocks with larger displays and buttons? Do they need dishes, clothes and other items moved to lower shelves? There are many ways to make a person's environment safer and more accessible.
- Be an advocate for the person you support and continue to support his or her self-advocacy needs. How can you help the person to remain in his or her own home? Communicate additional support or environmental needs to the service provider agency and help plan ahead.
- Learn about fall/accident prevention strategies. Check with your employer or local senior service center to learn more about fall prevention programs. You can also go towww.stopfalls.org. Many providers will already have this information, but if not, you can do this research.
Retirement and Social Networking
Retirement is a normal part of the aging process for many people. It is a time in life that people often view as an opportunity to try new activities, learn new hobbies, and meet new people. Remember, retirement does not need to be determined by chronological age. Rather, it should be determined by the needs and desires of the person being supported as they are aging.
For those who do retire, it can be a way to become engaged in their community in new ways. Some may have worked the majority of their lives in a segregated setting or workshop. This next stage of life can offer time to become more involved in a wider community and other areas of interest. Formal retirement programs are currently more limited for people with disabilities than for those without, but the numbers are growing. There is also increased awareness and options for people to participate in integrated community settings.
Staying active during retirement can help to minimize the loss of existing skills. Maintaining physical, social, and intellectual skills helps keep a person feeling young, enjoying life, and staying healthier longer. Some support strategies for DSPs in this area are:
- Educate the person you support about what retirement can mean. Give the person opportunities to experience activities he or she might choose to do in retirement, and support their decision-making regarding how and when to retire.
- Support the transition from work to retirement. This is a process and should naturally occur over time as the interests and abilities of the person you support change.
- Identify and gather information about recreational and social opportunities in the community. Assist the person to choose activities they like, respect their choices, and facilitate their participation in these activities.
Loss and Grieving
Many different types of loss commonly occur as people age, such as losses related to leaving friends at work, losing the skills or ability to participate in activities, and loss of friends and family to death. Friends and family become ill and may not be able to be as involved in the person's life. Oftentimes, people with intellectual and developmental disabilities have smaller groups of friends and family, or support networks, than people without disabilities. People with disabilities are often more isolated than those without disabilities, and may not have been part of a formal grieving process before. Anecdotal information suggests that often a DSP may want to "protect" a person from loss and grieving by not sharing information or supporting the person to participate in typical grieving processes. It is important that people with disabilities have the same opportunities as those without disabilities to grieve and experience rites of passage, such as wakes, funerals and other events. The DSP has an important role in supporting a person to cope with loss and grieving. Some strategies include:
- Share information about death in a way that the person you support can understand and process it. Do not hide information.
- Let the person you support talk to you about losing loved ones. You don't need to be a therapist. Listen without judging and give the person a sympathetic place to talk about their feelings. Being friendly and supportive is part of the DSP role.
- Support the person to attend wakes, funerals or other public functions of mourning. Ask the person how he or she would like to participate. Discuss with other family members or friends how to best support the person at the event. Be respectful of the wishes of the individual and the family of the deceased.
- Consider the person's faith. Involve clergy or other spiritual leaders as appropriate. Many religious leaders will provide guidance and consolation during times of grief.
End of Life Planning
End of life planning is another area in which a DSP may have a role. Learning about a person's wishes for their end of life care, including preferences about health care, establishing a living will, health care power of attorney, and other legal documents can all be considered end of life planning. End of life planning should be a thoughtful person-centered support process that includes people who are important in the life of the person you support. There are many models and programs available to support the end of life planning process. As a DSP you will want to learn more about end of life planning and understand your role in the process.
Aging holds opportunities and challenges for people with intellectual and developmental disabilities. There are many resources available for DSPs to use to learn more about their needs and how to apply the information to practice. This article is just a start.