AGING ISSUES FOR INDIVIDUALS WITH IDD

By Pauline Adongo, RN, MBA

Director of NursingDevereux PA Adult Services

MEDICAL CARE

Family members, care takers and agents should be assured that there are no limitations or prejudice with

respect to the level of medical care our individuals receive. There are practitioners who are specialized in

caring for individuals with IDD. Individuals have access to routine medical care and consultations with

specialists when needed. Medical services can be administered for acute conditions and transition to end

of life care through hospice services. The Devereux Foundation takes pride in its ability to provide medical

services and ensure the continuum of life for our individuals.

MEDICAL CONDITIONS THAT MAY IMPACT OUR INDIVIDUALS AS THEY AGE

Down’s Syndrome

Complex Seizure Disorders

Dysphagia

Gait imbalance

Endocrinal/Hormonal Changes

Effects of Long Term Psychotropics Medications (Oral Hygiene)

Other preexisting medical conditions

AGING ISSUES WITH DOWN’S SYNDROME

There is a known genetic link with Down's Syndrome and early onset Alzheimer’s disease

Memory and cognitive changes, deterioration in memory, learning and orientation tend to be the first signs, and these symptoms are often accompanied by increased dependence on caregivers and staff

May start very early, develop Dementia/Alzheimer's in middle age

May be mild initially but progress with time

People with Down’s syndrome may not present their symptoms verbally, because of their impaired communication skills.

Personality change is often associated with early involvement of

the frontal lobes. Presents with a greater prevalence

Low mood,

Excessive overactivity or restlessness,

Disturbed sleep, uncooperativeness and auditory hallucination

Delusions and hallucinations

SYMPTOMS OF DEMENTIA IN DOWN’S SYNDROME

Cognitive-Forgetfulness of recent events (progressively long-term), Geographical disorientation, Loss of previously learned skills, Confusion

Affective-Low mood, Insomnia hypersomnia, decreased concentration, aggression and irritability, Anxiety and fearfulness, loss of interest and anergia

Behavioral-Increased dependence, social isolation, excessive overactivity or restlessness, excessive uncooperativeness personality change, perceptual, hallucinations

Neurological-Dysphasia leading to aphasia, agnosia, apraxia, gait disturbances, seizures, myoclonus, urinary and bowel incontinence, dystonias , loss of mobility.

DYSPHAGIA

Difficulty swallowing; also called a swallowing disorder. It refers to any problem with swallowing food or liquids.

Dysphagia can be commonly seen in people with IDD, especially as they age or increase the number of medications they take.

A person with IDD might not be able to tell someone they have a swallowing disorder. However there are many signs and symptoms that indicate a person may have dysphagia.

Properly managing dysphasia can decrease the risk of an aspiration event, but cannot prevent all aspirations.

SYMPTOMS OF DYSPHAGIA

o

There are many different signs and symptoms of dysphagia. Most of them can be observed during and after mealtime, and include:

o

Coughing before or after swallowingo

Trouble chewing and swallowing certain types of food or liquids

o

Pocketing food inside the cheeko

Choking on certain foodso

Gagging during a mealo

Crying or face turning red during a mealo

Drooling-especially during mealso

Throat clearing frequently during and/or after a mealo

Hoarse throat during and after a mealo

Refusal to eat certain foodso

Unexplained weight losso

Meals takes a very long time

DYSPHAGIA (continued): SEEK MEDICAL HELP WHEN

There is difficulty breathing or swallowing

It takes more than 30 minutes to finish a meal

Some foods cause coughing

Frequent chocking when eating

Individual restricts their own diet because some foods are too hard to chew/eat

Unintentional weight loss

The person often is refusing foods and/or liquids

EXAMPLE OF DYSPHAGIA MANAGEMENT IN IDD POPULATION

Starts with a speech therapy (ST) evaluation to determine the risk of aspiration. Frequently, a speech therapy evaluation and a video swallow test are recommended by the ST or physician

Individual’s diet is modified to ensure safe swallowing. Food and liquid consistencies are modified. Food consistencies include:

Cut up↓

Chopped↓

Ground/Minced↓

Pureed

Fluid consistencies include:

Thin (regular liquid consistency)↓

Nectar↓

Honey ↓

Pudding

DSYPHAGIA MANAGEMENT (continued)

Individuals may require certain restrictions with the diet modifications. They may be required to

Avoid using straws for drinking

Be positioned upright during meals and to stay seated upright for 30 minutes before engaging in other activities

Positioning devices may be needed in bed to keep the head of bed elevated. Doing this prevent regurgitation of stomach content into the gut; preventing aspiration.

Most individuals must be supervised at meal times.

Use adaptive equipments during meals

ADAPTIVE EQUIPMENT FOR FEEDING

Most are available in medical supply stores:

ADVANCED DYSPHAGIA, TUBE FEEDING DECISIONS

Individuals with advanced dysphasia may require nutrition to be administered artificially through a tube feeding

Tube feeding does not necessary stop regurgitation or aspiration

but is an alternative means to nutrition.

The decision to initiate tube feeding should be discussed with the primary physician, GI , family and the team; and should be included in the individual’s advanced directives

Tube feeding can be administered at home, group home or any program setting. Most providers have trained staff who can care

for individuals with tube feeding.

The main key with tube feeding is to ensure that the tube feeding is properly placed in the abdomen and regularly evaluated by a GI/Nurse. The family or team should still monitor the individual

for aspiration.

IMPACT ON MOBILITY

Foot Care:-Should watch for the following:

Ensure proper fitting shoes

Worn out shoes may cause additional changes especially if foot deformities exist.

May need prosthesis due to deformities, may require specialized shoes or braces

Changes in Mobility

-Mobility impairment may increase with age,

watch for changes in gait.

Increased spinal curvature/crunching with time

Increased unsteadiness and/or falls

Standing for long periods of time may cause venous stasis

IMPACT ON MOBILITY

Ambulation Safety-

Risk for Fractures-

Osteoporosis, or any condition that would weaken the bones. Also contractures mostly of the hands and feet. Splinting

may be necessary

Impulsive mobility-

No awareness of safety or limitations

Weakened

muscles/bones from immobility

Weight Loss

Treatment Options

-Bones may weaken with time. It is important to have the physician evaluate calcium and vitamin D levels. Some medications may cause weak bones with time. Additional scans should be ordered when needed such as Dexascan.

Frequently evaluate braces or shoes to ensure they fit

Regular podiatry care; critical if they have diabetes or foot deformities

Use of Ted stockings to help with blood circulation

May require Physical or Occupational Therapy services to help with mobility and assistive devices

Consult local hospital that have Fall Prevention Programs. Individuals can attend these programs on an outpatient basis

ENDOCRINAL & HORMONAL CHANGES

Females-

Watch for changes in menstrual circles. Gynecological complications can still be treated.

Still important to screen for breast cancers by conducting mammograms

Consult with physician on the best treatment option.

Male Breast Cancer-

most common in older men, though male breast cancer can occur at any age. Many men delay seeing their doctors if they notice unusual signs or symptoms, such as a breast lump. For this reason, many male breast cancers are diagnosed when the disease is more advanced

Males-

PSA screening still crucial to detect prostrate cancer at age 40 and above, although controversy exists.

Other Important Screening:

Also important to ensure colorectal screening with colonoscopies

conducted at age 50 and above. Screening may be done earlier if there is family history of the medical condition.

in both genders, it is importance to monitor blood sugar and thyroid levels that can be altered by the medications that the individuals take.

Essentially, physicians at Devereux evaluate individuals and their conditions regardless of the level of IDD

MALE BREAST CANCER

Because men are born with a small amount of breast tissue, they can develop breast cancer. Types of breast cancer diagnosed in men include:

Cancer that begins in the milk ducts.

Ductal carcinoma is the most common type of male breast cancer. Nearly all male breast cancers begin in the milk ducts.

Cancer that begins in the milk-producing glands.

Lobular carcinoma is rare in men because men have few lobules in their breast tissue.

Cancer that spreads to the nipple.

In some cases, breast cancer can form in the milk ducts and spread to the nipple, causing crusty, scaly skin around the nipple. This is called Paget's disease of the nipple.

Inherited genes that increase breast cancer risk

Some men inherit mutated genes from their parents that increase the risk of breast cancer.

IMPACT OF MEDICATIONS/PSYCHOTROPICS ON ORAL HYGIENE

Commonly used medications in IDD include:o

Dilantin (Phenytoin)-Used in the treatment of seizure disorder

o

SSRIs-Selective Seratonin Reuptake (SSR) Inhibitors, Fluoxetine hydrochloride (Prozac),Fluvoxamine (Luvox), Paroxetine (Paxil), Sertraline hydrochloride (Zoloft)

o

Benzodiazepines;

Diazepam (Valium), Lorazepam (Ativan)

o

Calcium Channel Blocker

-Used in the management of hypertension(Nifedipine) Procardia

o

Antihistamines and other immuno suppressive medications

IMPACT OF MEDICATIONS/PSYCHOTROPICS ON ORAL HYGIENE

Approximately 50% of patients using Dilantin will develop gingival enlargement (also called Gingival hyperplasia or Gingival overgrowth). This condition will resolve when discontinued in approximately 4 to 6 weeks

Other side effects of medications used our population include:

Xerostomia (Dry mouth)

Increased caries incidence

Increase periodontal disease

Increases oral clearance times (time food stays in mouth)

EXAMPLE EXAMPLE DILANTIN GINGIVAL HYPERPLASIADILANTIN GINGIVAL HYPERPLASIA

DECISION MAKING IN MEDICAL CARE: ADVANCED DIRECTIVES

The issue of advanced directives may not present a problem when the individual is young but as they age and are faced with advanced medical issues, it is important to have an advanced directives that would assist the team and healthcare providers direct the care of the individual.

The challenge too is that as the parents grow old or become incapacitated, some may not be in position to make decisions for their loved ones. This really becomes a problem when guardians or healthcare proxies are not identified.

Where the individual is diagnosed with mild mental retardation, the individual can still make advanced directives decisions. However, psychiatrist must deem the individual as competent to make such decisions.

Would recommend that parents meet with the primary physician, psychiatrist and an attorney to discuss advanced directives.

MEDICAL CARE: ADVANCED DIRECTIVES & GUARDIANSHIP

Once the individual turns 21, he becomes an adult and although parents may still be responsible parties, parents must seek guardianship

in order to be recognized in the medical field.

Would recommend that parents meet with and attorneys and providers to have themselves appointed as Legal Guardians. Parents should also identify surrogate guardians or responsible parties in the event that they (parents) are incapable of functioning as guardians

Examples of scenarios that would be easy to manage if advance directives or guardians were present include:

Consents for medical tests or procedures

Advanced Dysphasia-Tube feeding/no tube feeding

Kidney Failure-Dialysis/No dialysis

Cancer-Radiation/Chemotherapy –

palliative care

Advanced Cardiac conditions-

Resuscitate, intubate or not

Hospice Care

In the absence of a decision maker, medical care may be delayed.

Delaying care may be detrimental since the condition could be advancing while we wait for decisions to be made. Secondly, it may be too late to seek guardian ship for the individual if the condition is already critical.

OUR COMMITMENT

At the Devereux Foundation, we are committed to our Mission by ensuring that the medical

care administered is specific and individualized. We treat our individuals

holistically. We continue to offer medical services at various levels, ranging from acute

to palliative care.