Aging of MSers brings with it a new set of problems. Are these the same whether or not MS is a factor?
I started a new series on Aging with MS. We talked about problems such as weakness, vision, fatigue and other health issues that plague MSers as well as any person who is aging. It all sounds pretty similar, but as I concluded, the real problem may be that there is little research about older MSers.
Many cultures seem to respect and even revere their elders, but that is not particularly true in America. There are services for older Americans, but not necessarily any that specifically target the needs of older MSers. Why not? We do not even know clearly what the differences may be. It is not likely that people with MS who age require the same things as people without MS?
In the following topics, there are questions to be asked and solutions to be found:
Medications available for MS treatment are usually not being tested on the older MS population. Treatment solutions for older people with MS are usually known medicines that treat symptoms, physical therapy to adapt to new conditions and occupational therapists to rearrange living environments and make everyday tasks easier. Is it enough? Perhaps a neurologist who has a large geriatric patient population could offer more.
Professional caregivers are generally expensive, and there is little financial help for caregiving. Often a person becomes a caregiver by circumstance, sometimes when a spouse or significant other develops MS. "More than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year . . . . "* Being thrown into this unfamiliar activity of caring for a family member, whether it be full- or part-time, brings up a multitude of questions and feelings. There is a problem when an older MSer has a life partner who is a caregiver — the caregiver is older, too, and subject to old age conditions, weakness, and other things that impair his or her ability to be a good primary caregiver for too many years.
There are many facilities, some with assisted care, available when caring for the aged. Regulations are becoming stricter and services are including a wider spectrum of residents. However, few if any of these are set up to target treating people with MS.
Why are there few clinical tests that involve older MSers? Most clinical trial inclusion factors do not deal with people over 65 whose symptoms may be too severe for the test. If the test is planned over a long period of time, that is years, it is likely to have a large drop out rate, or at least the sponsors who are funding it think so. Therefore, test participants are not over 65.
I found a German Multiple Sclerosis Association survey that questioned 53 people who were an average of 73 years old. They had MS an average of about 25 years and 96% scored above 6.0 on the expanded disability status scale (EDSS), meaning "Intermittent or unilateral constant assistance (cane, crutch, brace) required to walk about 100 meters with or without resting".
The survey included questions on topics that concern social situations, daily problems, disease course, and current disabilities. Survey respondents considered themselves to have a great deal of mobility problems, and therefore, they often had problems with public transportation.
Respondents also reported the following:
- Nearly 50% experienced spasticity and also reported pain because of it.
- Over 70% had bladder dysfunction.
- Fewer than 20% had sleep problems, though they did report interrupted sleep.
- Less than 20% reported fatigue.
- About 50%-75% reported problems taking care of themselves.
- More than 30% experienced depression, some even thinking of suicide.
Of the 73 elderly people who completed this survey, most of them reported needing professional help of some kind. They experienced physical and psychosocial problems. They expressed a need for health care professionals to consider increasing MSer patient independence and help avoid nursing home admissions for the management of elderly MS patients.
Knowledge about the problems of elderly MS patients is important to the development of nursing and public health activities and facilities that must care for them.
Notes and Links:
*National Family Caregivers Association - caregiver statistics
EDSS - Expanded Disability Status Scale
Health care survey
Published On: December 09, 2009