Parkinson’s disease is one of the most common neurodegenerative disorder of the old age, caused due to the loss of dopamine producing neurons. The deficiency of chemical neurotransmitter dopamine, gets expressed in the form of grave debilitating symptoms ranging from tremors, dyskinesia to freezing of gait and frequent falls and the patient eventually loses the right over the control and coordination of his/her own body.
This fatal progressive disorder has no specific completely curative intervention as yet, and the main focus of all the widely available synergistic therapies lies on the restoration of dopamine to normal levels and to provide symptomatic relief to the patient and to boost up his quality and comfort of life.
However, leading to an inevitable end, Parkinson’s disease, especially in the late stages, can take its toll not only on the patient but also on the caregiver and a time may come when there is no other option but to institutionalize the patient. It can be a heart-breaking decision, particularly when the patient is a spouse or parent, but the relentlessly progressive changes in the physical and mental health that take place in Parkinson’s disease often leaves no other option open. Studies indicate that 20% to 53% of PD patients will eventually be institutionalized.
Reasons why a caregiver may consider a nursing home
Caregiver strain or caregiver burnout is the most common reason for institutionalizing a Parkinson’s disease (PD) patient. Various factors can lead to caregiver strain, both physical and mental and affect the caregiver’s life on multiple levels (social, financial, emotional).
A patient with Parkinson’s disease may face low self-esteem as a result of the physical aspect of the illness. Varying degrees of social isolation is inevitable. Depression, anxiety and stress follow, which do not make caring for a person any easier. Relationships falter and tremendous emotional adjustments have to be made, both by the patient and the caregiver. Changes in the mental status of a PD patient, depression and dementia, leading to aggression or non-cooperation by the patient may make looking after such a person quite difficult.
Caring for more severely affected patients may not be physically possible for a caregiver, especially an elderly spouse, who may not have the necessary stamina or may be suffering from some debilitating or chronic conditions. Activities such as feeding, dressing, bathing, moving or toileting a PD patient requires a lot of effort on the caregiver’s part.
There may be more demand on the caregiver’s time and patience than they are willing or able to give. Disrupted sleep, mental and physical exhaustion, sadness, depression, and changing relationships, all take their toll on a caregiver, who may feel inadequate in dealing with such emotions. Less life satisfaction, inability to live for oneself or feelings of guilt may intrude on a caregiver.
Marriage and sexual life, freedom to make plans for oneself, travel and socializing are all affected adversely while caring for a partner with PD. The longer the duration of the disease, the greater the effect on the caregiver. When feelings of resentment increase in the caregiver it may be preferable to place a PD patient in a nursing home. A caregiver may lapse into depression or suffer from other emotional disabilities from feelings of inadequacy.
When to consider committing a Parkinson’s Disease patient
Caregivers often face criticism from other family members regarding their decision or ability to provide care at home. However, there comes a point where a caregiver may be unable to provide the appropriate care within the home environment and has to consider institutionalization despite criticism and guilt. If in doubt, the caregiver should speak to a doctor and/or psychologist to consider whether this decision is appropriate for both parties. Some of these reasons include :
- The responsibility becomes too great to handle by oneself at home.
- The baseline evaluation of motor symptoms is done by Unified Parkinson’s Disease Rating Scale (UPDRS) and is considered to be an important decisive factor in the institutionalization of PD patients.
- Cognition of the Parkinson’s patient is assessed by clinical dementia interview, and Mini-Mental State Examination.
- The associated depression in the Parkinson’s affected individual is assessed by Montgomery and Asberg Depression Rating Scale, followed by a clinical interview, to decide the admission of patient in nursing care
- Psychotic symptoms: Inability to control neuropsychiatric symptoms, such as delusions, hallucinations, or disinhibition may make nursing home placement imperative and is assessed by UPDRS thought disorder item.
- Dementia and incontinence, associated with extreme rigidity and immobility.
- Sudden illness or demise of a caregiver, with no other substitute caregiver, may make institutionalization of the patient the only option.
- Patients seeking help with the six basic Activities of Daily Living (ADL), which include eating, bathing, dressing, toileting, functional mobility or transferring and continence.
Generally both motor and neuropsychiatric complications advocate the institutionalization of the patient, however the presence of hallucinations is the strongest indicator. In other words, it can also be said that an appropriate and effective treatment of the hallucinations scale down the need to admit the Parkinson’s patient in long term care facility.
Unified Parkinson’s Disease Rating Scale (UPDRS)
It is used to follow the longitudinal course of Parkinson’s disease, and is the most commonly used scale in the clinical evaluation of PD. It is evaluated by interview and clinical examination and is made up of six sections.
- To evaluate the mentation, behavior and mood.
- To evaluate the Activities of Daily Life (ADL)
- Clinically scored and monitored motor symptoms evaluation
- Evaluation of the complications due to therapy
- Hoehn and Yahr staging to assess the severity of Parkinson’s disease
- Schwab and England ADL scale
Advantages of the institutionalized care of the Parkinson’s patients
There will be always a substantial unmet need in the palliative care of Parkinson’s disease. These advanced nursing homes focus on the nursing care of severe motor function impairment, cognitive impairment and psychosis. Increased efforts are mandatory to provide an appropriate specialized care to the dependant Parkinson’s patients and enhance their end-of-life care.
These centres take up the responsibility of the end stage patients, and provide the caregiver, a chance to recover from the responsibility of the exhaustive care and patience and to focus on the economic growth of himself, his family, and thereby the community and nation at large. Thus, these centres play a crucial role in relieving the caregiver burden in the form of physical, mental and socioeconomic factors