Registry of volunteers for Alzheimer’s patients

It serves two different people and it is worth knowing which you are. If you care for someone with Alzheimer’s, this Act creates the body whose job is to coordinate your receiving help: physical care for the patient, medical treatment, social help and assistance from other agencies. If you want to volunteer, it creates the registry you sign up to and says what is expected of you. What the Act does not do, and we say so up front, is describe the procedure: it carries no form, no documentary requirements, no term, and no way for a family to ask that a volunteer be assigned. That was left to a regulation the Act itself orders approved and which we did not read.

For the volunteer, Article 3 sets four conditions and that is all the Act says on the matter: having the capacities, knowledge and skills needed to care for people with this illness; having irreproachable social conduct; having committed no offences; and being able to offer first aid assistance to patients where necessary. Article 4(h) adds that volunteers must comply, so far as not incompatible with this Act, with Act 261-2004, known as the Volunteering Act of Puerto Rico. The Act does not say how any of those four conditions is verified. On the families’ side, the Registry coordinates help to caregivers and relatives of Alzheimer’s patients, without the text setting an income, age or documented-diagnosis requirement.

• The volunteer must have the capacities, knowledge and skills needed to care for people with Alzheimer’s (Article 3).Verified against the official source
• The volunteer must have irreproachable social conduct and have committed no offences (Article 3).Verified against the official source
• The volunteer must be able to offer first aid assistance to patients, where necessary (Article 3).Verified against the official source
• The volunteer must comply with Act 261-2004, the Volunteering Act of Puerto Rico, so far as not incompatible with this Act (Article 4(h)).Verified against the official source

Information pending verification.

1. 1

   Step 1: What it is and who runs it

   Article 2 creates the Registry of Volunteers for the Care of Alzheimer’s Patients in Puerto Rico and attaches it to the Office of the Elderly Advocate. It is not a Department of Health programme, although the Act requires coordination with it for the database of diagnosed cases.

2. 2

   Step 2: If you are a caregiver or relative

   This is the half of the Act most often overlooked. Article 3 says the Registry shall be “the principal government body charged with coordinating efforts so that caregivers and relatives of Alzheimer’s patients receive help in caring for that condition,” and lists what that help may include, without limitation: physical care for patients, adequate medical treatment, social help, assistance from other government agencies, and help for the patients’ relatives and caregivers. It is a coordination duty placed on a named office, which is more than usually exists.

3. 3

   Step 3: If you want to volunteer

   Article 3 sets what the Registry must ensure in whoever signs up: the capacities, knowledge and skills needed to care for people with this illness; irreproachable social conduct; having committed no offences; and being able to offer first aid assistance where necessary. It is worth being honest about what the Act does not say: it does not set how any of that is checked, requires no specific training or hours, and does not describe the form. Article 4(c) does say the information will be collected via forms designed by the Advocate’s Office itself, electronic or on paper.

4. 4

   Step 4: What happens to your data

   Article 4(d) is clear: the contact information of patients and volunteers shall be treated confidentially, and may be disclosed to third parties only case by case, “with the sole and exclusive objective of coordinating care for Alzheimer’s patients, as well as offering help to their relatives and caregivers.” It may further be used in epidemiological and statistical studies, scientific research and for educational purposes, provided the identity of the patient and of the volunteers is not disclosed. Article 4(a) requires the Registry to comply with the federal HIPAA law and with the Patient’s Bill of Rights and Responsibilities of Act 194-2000.

5. 5

   Step 5: The liability disclaimer the Act carries

   This is worth knowing before signing up or receiving a volunteer at home. Article 3 closes by saying nothing provided there shall be understood as meaning the Office of the Elderly Advocate, the Government of Puerto Rico or any public body will answer in damages for harm caused by the acts, conduct, statements and expressions of registered volunteers, or by those who intervene in assisting patients, their relatives and caregivers. The Act does not say what happens then, and we do not invent it.

6. 6

   Step 6: The other database, which is not the same one

   They should not be confused. Article 4(a) says the Registry, in coordination with the Alzheimer’s Centre and Registry of the Department of Health’s Geriatrics Programme, shall maintain a database of all cases diagnosed with this condition in Puerto Rico. That is: the volunteer registry and the case registry are different things, and the latter lives in another entity that must be coordinated with. The Act does not describe how a patient enters that database or whether they can ask to leave it.

7. 7

   Step 7: How to know whether it is working

   The Act leaves a public trail. Article 4(f) requires the Registry to file a report, with the Secretariat offices of the Senate and the House of Representatives, no later than 31 January each year, with information on the number of persons registered and on the efforts made to publicise the Act. And Article 5 requires, before approving the first regulation, the holding of public hearings in different parts of Puerto Rico to guarantee the broadest participation of all health sectors.

The Registry is attached to the Office of the Elderly Advocate, which is also who designs the forms and who may promulgate the regulations. The Act names no regional offices, publishes no internet address or telephone, and we guess none.

• Looking for it at the Department of Health: the Registry is attached to the Office of the Elderly Advocate.
• Confusing the volunteer registry with the database of diagnosed cases: they are different things and the latter is coordinated with Health’s Alzheimer’s Centre and Registry.
• Believing the Act describes how to request a volunteer: it imposes a coordination duty on the Registry, but gives the family no published procedure.
• Expecting concrete documentary requirements for the volunteer: the Act sets four conditions but does not say how they are checked.
• Assuming there is mandatory training with set hours: the Act asks for first aid capability but sets no course or duration.
• Thinking the government answers for what a volunteer does: Article 3 expressly excludes it.
• Believing your data is public: contact information is confidential and disclosed only case by case to coordinate care.
• Taking it for granted the registry is already operating with a regulation: before the first regulation the Act requires public hearings, and we did not read that regulation.

These are the government pages this guide is based on.

• Oficina del Procurador de las Personas de Edad Avanzada (OPPEA)

  OPPEA

  bvirtualogp.pr.gov