SUBMISSION TO PORTFOLIO COMMITTEE ON OLDER PERSONS BILL
BY
ALZHEIMER’S S.A. (Western Cape Region)
THE HONORABLE CHAIRPERSON, HONORABLE MEMBERS -ALZHEIMER’S S.A. (WESTERN CAPE REGION) WELCOMES THE OPPORTUNITY TO ADDRESS THE COMMITTEE ON THE OLDER PERSON BILL.
DUE TO TIME CONSTRAINTS WE ARE NOT ABLE TO GO THROUGH OUR ENTIRE SUBMISSION, BUT WOULD ENCOURAGE THE COMMITTEE TO PLEASE TAKE NOTE OF OUR SUBMISSION AND ISSUES RAISED NOT ONLY BY THE ORGANIZATION BUT BY OUR MEMBERS WHO ADDED THEIR VOICE IN THE 40 ATTACHMENTS TO OUR SUBMISSION.
I ENDED OUR WRITTEN SUBMISSION WITH THE QUESTION TO THE COMMITTEE ASKING YOU TO CONSIDER "HOW WILL THIS BILL IN ITS CURRENT FORM ASSIST ME WHEN I AM OLD, IN NEED OF CARE, SUFFERING FROM DEMENTIA OR BEING ABUSED BE I RICH OR POOR?".
I DO NOT THINK ONE CAN BEGIN TO ANSWER THIS IF ONE DOES NOT REALLY HAVE AN UNDERSTANDING OF WHAT LIFE IS LIKE FOR AN OLDER PERSON WITH DEMENTIA AND THE IMPACT THAT IT HAS ON THEIR LIVES AND ON THE LIVES OF OTHERS AROUND THEM. FIRSTLY I WOULD LIKE TO CLARIFY SOME ISSUES THAT MAY HAVE CAUSED CONFUSION IN TERMS OF TERMINOLOGY USED IN THE FIRST DAY OF HEARINGS.
THE TERM DEMENTIA IS THE GLOBAL TERM USED FOR ALL DIFFERENT TYPES OF MEMORY RELATED ILLNESSES OF WHICH ALZHEIMER’S DISEASE IS THE MOST COMMON, FOLLOWED BY VASCULAR DEMENTIA, LEWY BODY DEMENTIA, PICK’S DISEASE, HIV/AIDS COMPLEX DEMENTIA AND NUMEROUS OTHER TYPES (THERE ARE A 100 IN ALL). THE TERM SENILE DEMENTIA IS NO LONGER USED BUT INSTEAD EARLY OR LATE ONSET ALZHEIMER’S DISEASE.
THOSE ELDERLY PEOPLE WHO WILL SUFFER FROM DEMENTIA POSE THE BIGGEST CHALLENGE TO HEALTH SERVICES IN THE FUTURE, AS OUR POPULATION IS AGEING. IT IS NOT A PROBLEM THAT WILL GO AWAY BUT NEEDS TO BE RAISED AND ADDRESSED WITH URGENCY. AGE IS ONE OF THE BIGGEST RISK FACTORS IN DEVELOPING DEMENTIA, AND WITH THE INCREASED LIFESPAN EXPECTANCY THE PERCENTAGE OF ELDERLY IN THEIR 80’S AND THEREFORE VULNERABLE INCREASES MARKEDLY.
ARE THERE ANY PEOPLE HERE AGED 60-64? YOU HAVE A 1% CHANCE OF DEVELOPING DEMENTIA 65 – 70 YOU HAVE 2% CHANCE 70 – 74 - 4% ; 75 – 80 YEARS 8% AND OVER 85 YEARS 1 IN EVERY 2-3 WOMEN AND 1 IN EVERY 4 MEN WILL DEVELOP DEMENTIA.
THESE ARE THE FRAIL AND VULNERABLE OLDER PEOPLE THAT THE BILL DOES NOT EVEN MENTION AS ALL REFERENCES TO FRAILTY HAVE UNFORTUNATELY BEEN REMOVED FROM THE BILL. YET IT IS IN ALL LIKELIHOOD THAT THESE ARE THE OLDER PEOPLE THAT WILL IN THE FUTURE BE FILLING THE BEDS IN FRAIL CARE CENTERS. IT IS THESE OLDER PEOPLE WITH DEMENTIA THAT REQUIRE IN THE END STAGE OF THE ILLNESS, 24 HOUR NURSING CARE, AND SKILLED AND TRAINED STAFF WHO UNDERSTAND AND HAVE KNOWLEDGE OF THE ILLNESS AND THE CONDITIONS THEREOF. WORKING FOR THE ELDERLY IS NOT RECOGNISED IN THIS COUNTRY AS AN AREA OF SPECIALIZATION AND FOR MANY CARERS IT IS MERELY A JOB. YET, IT IS AN AREA THAT REQUIRES VAST SPECIALIZATION IN TERMS OF THE SPECIFIC ISSUES AND DEMANDS. IT WAS WITH CONCERN THAT ROLE OF THE SOCIAL WORKERS WAS DISMISSED IN THE FIRST DAY’S HEARINGS SAYING THAT THEY DO NOT NEED HONOURS DEGREES. THEY ARE NOT CARERS, PROVIDING THE DIRECT HANDS-ON CARE, BUT SPECIALIST SKILLS ARE NEEDED IN DEALING WITH THE ELDERLY AND THEY HAVE A VALUABLE ROLE AT A SPECIFIC LEVEL OF INTERVENTION AND ALSO IN PROVIDING TRAINING AND IMPLEMENTING MORE PROGRAMMES. IT IS SAD THAT SO FEW SOCIAL WORKERS FIND THIS AN INTERESTING AND REWARDING AREA TO WORK IN MAINLY BECAUSE THEY OFTEN DON’T UNDERHAND THE COMPLEXITIES AND CHALLENGES FACED BY THE ELDERLY.
ALZHEIMER’S S.A. HAS ALWAYS SUPPORTED AND ASSISTED CARERS IN ORDER TO FACILITATE THEM IN LOOKING AFTER THEIR LOVED ONE’S AT HOME FOR AS LONG AS IS POSSIBLE AND SAFE FOR ALL CONCERNED, SO IT IS WITH CONCERN THAT WE SEE THAT THE EMPHASIS IN THE BILL IS ON INSTITUTIONAL CARE.
FOR MANY PROVIDING HOME-CARE IS EXPENSIVE AND THERE IS LIMITED SUPPORT AVAILABLE TO ASSIST THEM IN THEIR ROLE. SUPPORT IN THE HOME AND COMMUNITY THAT WOULD MAKE A MEANINGFUL DIFFERENCE IN FACILITATING HOME-BASED CARE INCLUDE: HOMECARE & HOME-NURSING SERVICES, ASSISTIVE DEVICES, HOME NURSING SERVICES, HOME MODIFICATIONS, MEALS-ON-WHEELS, INCONTINENCE PRODUCTS, DAY-CARE. HAVING AN ADEQUATE INFRASTRUCTURE IN PLACE WILL ASSIST IN DELAYING INSTITUTIONAL CARE. OFTEN INSTITUTIONAL CARE IS ALSO DELAYED AS FINANCIALLY IT IS NOT POSSIBLE FOR THEM TO AFFORD THE COSTS.
IN TERMS OF PRACTICAL SUGGESTIONS REQUESTED BY THE CHAIRPERSON I WOULD LIKE TO PROPOSE THE FOLLOWING:
WITH REGARDING INVESTIGATIONS IN FACILITIES AND FOLLOWING THROUGH AS THERE ARE NO TIME-FRAMES OR GUIDELINES FOR INTERVENTION PROPOSED IN THE BILL. IT IS THEREFORE SUGGESTED THAT THE DIRECTOR-GENERAL COULD CONSIDER SETTING UP MULTI-DISCIPLINARY TASK TEAMS IN THE PROVINCES TO INVESTIGATE AND MAKE APPROPRIATE RECOMMENDATIONS AND TO INITIATE CHANGES IN INSTITUTIONS WHEN THERE HAVE BEEN COMPLAINTS. AT PRESENT HEALTH AND SOCIAL SERVICES PASS ISSUES BETWEEN THEM WITH NO ONE WANTING TO TAKE RESPONSIBILITY AND EVEN WHEN INVESTIGATIONS ARE DONE LIMITED ACTION IF ANY IS TAKEN.
HOW ACCOUNTABLE ARE THE PRIVATE HOMES REALLY TO THE MINISTER IF THEY DO NOT RECEIVE A SUBSIDY? THERE NEEDS TO BE MORE ACCOUNTABILITY FOR ANY PEOPLE PROVIDING SERVICES TO THE ELDERLY WHETHER THOSE SERVICES BE FOR FREE OR IF THEY ARE CHARGED FOR THEM. THE MINISTER NEEDS TO BE ABLE TO ACT IF INCIDENCES ARE REPORTED IN PRIVATE FACILITIES.
IN SECTION 9 (4) SUBJECT TO AN ORDER OF THE COURT NO OLDER PERSON MAY BE ADMITTED TO AN FACILITY WITHOUT HIS OR HER CONSENT.
THIS ISSUE WAS RAISED IN THE FIRST DAY OF THE HEARING, AND IT IS FELT THAT THE IMPLICATIONS OF THIS MATTER WERE NOT FULLY UNDERSTOOD. AS IT RELATES DIRECTLY TO PEOPLE WITH DEMENTIA IT IS FELT THAT IT IS IMPORTANT THAT IT BE CONSIDERED VERY CAREFULLY.
WHILE WE FULLY SUPPORT THAT ANYONE WHO IS COMPETENT TO MAKE AN INFORMED DECISION NEEDS TO BE ABLE TO DO SO, WE NEED TO UNDERSTAND THAT THERE IS A GROUP OF ELDERLY PEOPLE SUFFERING FROM DEMENTIA (AND PARTICULARLY END STAGE DEMENTIA) WHO ARE NOT COMPETENT NOR DO THEY HAVE THE MENTAL CAPACITY TO MAKE DECISIONS AS A RESULT OF HAVING DEMENTIA.
GOING TO COURT TO GET PERMISSION TO HAVE THEM ADMITTED TO A FACILITY IS VERY COSTLY AS IT INVOLVES A HIGH COURT ORDER AND IT ALSO TAKES TIME. OFTEN THERE IS A CRISIS SITUATION (E.G. THE PERSON WITH DEMENTIA HAS A FALL AND SUSTAINS A FRACTURE) AND IS NOT ABLE TO RETURN HOME AND NEEDS TO BE PLACED IN AN INSTITUTION EITHER TEMPORARILY OR PERMANENTLY. THEY WILL NOT BE ABLE TO GIVE CONSENT. DEMENTIA IS A DIAGNOSABLE DISEASE AND IT IS VERY POSSIBLE TO DETERMINE WHETHER OR NOT THE PERSON WITH MODERATE TO SEVERE DEMENTIA IS CAPABLE OF GIVING CONSENT. THIS IS A COMPLETELY DIFFERENT SCENARIO TO SOMEONE WITH A PHYSICAL CONDITION BEING "DUMPED" AT AN OLD AGE HOME BY RELATIVES WHO SIGN ON THE OLDER PERSONS BEHALF.
I CURRENTLY HAVE AN 87 YEAR OLD LADY WITH ADVANCED ALZHEIMER’S DISEASE FOR WHOM I AM HER CURATOR PERSONAE. SHE RECENTLY FRACTURED HER HIP AND HAD TO BE HOSPITALISED. SHE REFUSED TO GO WITH THE AMBULANCE PARAMEDICS AS SHE SAID THERE WAS NOTHING WRONG WITH HER – THIS DESPITE HER HIP LYING AT AN ODD ANGLE. OTHER THAN WHEN SHE IS MOVED AND THEN ONLY MOMENTARILY DOES SHE EXPERIENCE PAIN. SHE HAS NO RECOLLECTION THAT HER HIP IS BROKEN. SHE TELLS EVERYONE THAT VISITS THAT SHE IS FINE AND THAT SHE IS COOKING AND CLEANING FOR HERSELF DESPITE LYING IN A HOSPITAL BED. THIS LADY IS FORTUNATE ENOUGH TO HAVE HAD A COURT ORDER, WHICH PROBABLY COST IN THE REGION OF R30 000-00 TO PLACE HER UNDER CURATORSHIP . THIS MADE IT POSSIBLE FOR A DECISION TO BE MADE ON HER BEHALF AND I HAD THE AUTHORITY TO SIGN HER IN TO HOSPITAL AND FOR CONVALESCENT CARE. HAD I NOT HAD THE AUTHORITY SHE COULD NOT HAVE GIVEN CONSENT AND UNDER THE PROPOSED BILL WOULD HAVE BEEN REFUSED ADMISSION AND CARE IN A FACILITY. THIS DESPITE THE FACT THAT SHE WAS A DANGER TO HERSELF AS SHE WOULD HAVE BECOME IMMOBILISED AND STARVED TO DEATH ON HER OWN. I WOULD THEREFORE LIKE TO PROPOSE THAT THE WORDING OF THE BILL BE CHANGED IN SECTION 9 (4) TO no older person may be admitted to a facility without his or her consent, a court order or where they would be at risk if not admitted.
ELDERLY PEOPLE WITH DEMENTIA ARE PARTICULARLY VULNERABLE TO BEING ABUSED, AND IN PARTICULARLY FINANCIALLY ABUSED AND WE THEREFORE APPLAUD THE FACT THAT A CHAPTER IN THE BILL IS FOCUSSED ON ABUSE AND PROTECTING THE OLDER PERSON. WE HOWEVER, VERY STRONGLY FEEL THAT THE EMPHASIS AGAIN SHOULD NOT BE ON INSTITUTIONAL ABUSE AS THE WORST CASES OF ELDER ABUSE ARE OFTEN AS A RESULT OF A FAMILY MEMBER OR SOMEONE THE OLDER PERSON HAS KNOWN. INTERVENING IN THE HOME SITUATION IS ALSO MORE DIFFICULT AND THERE NEED TO BE CLEAR GUIDELINES AND STRATEGIES FOR INTERVENTION (WHO SHOULD BE REMOVED AND HOW) IN ORDER TO NOT HAVE SECONDARY ABUSE TAKE PLACE.
IT IS FELT THAT REPORTING ABUSE TO THE DIRECTOR-GENERAL IS NOT PRACTICAL AND THAT INSTRUCTIONS WOULD TAKE TOO LONG TO BE COMMUNICATED. OFTEN ACTION NEEDS TO BE TAKEN IMMEDIATELY. IT WOULD BE FAR SIMPLER AND WOULD ENCOURAGE EASIER NOTIFICATION AND ACTION IF THE DIRECTOR-GENERAL COULD ALSO DESIGNATE A BODY E.G. ACTION-ON-ELDER-ABUSE AND THEIR TOLL-FREE LINE HEAL AS A CONDUIT FOR REPORTING THE ABUSE AND RESPONDING TO IT THROUGH THEIR TASK TEAMS AND WHO COULD THEN INFORM THE DIRECTOR-GENERAL WHO CAN OVERSEE AND KEEP STATISTICS.
FURTHERMORE WE ARE STRONGLY IN SUPPORT OF THE FOLLOWING TO BE INCORPORATED INTO THE BILL:
WE FEEL STRONGLY ABOUT THE RIGHTS OF THOSE ELDERLY PEOPLE WHO AS A RESULT OF A DEBILITATING ILLNESS, DEMENTIA, ARE NOT ABLE TO SPEAK FOR THEMSELVES AND NEED THE APPROPRIATE CARE BE IT IN THE COMMUNITY OR AN INSTITUTION DEPENDING ON THEIR AND THEIR FAMILIES NEEDS AND RESOURCES. WE WILL CONTINUE TO STRIVE TO ASSIST THEM THROUGH THE SERVICES OF ALZHEIMER’S S.A.
THANK YOU.
LINDY SMIT