Articles

Interview with Marija Padjen, Program Manager of the Alzheimer’s Society of Toronto

Caring Matters: Thank you for the opportunity to talk with you to learn about the Society’s various programs. Perhaps you can briefly outline the different programs for us.

Marija Padjen: The Counselling program has been around from the very beginning in different manifestations. Currently we have three to three and a half counsellors, who are all social workers by education. The Counselling program serves individuals, who have been diagnosed with dementia; these are not only people with Alzheimers’ but also those with other forms of dementia and their families. The Counselling is provided in various ways – primarily by phone, when we are contacted by people with the disease or their families. They also have the option of coming in to the office and we do limited outreach into the community. The outreach is limited to people, who might not be able to come in or don’t want to or cannot use a phone.

CM: Do you get better results when you do counsel in-home rather than in the office or on the phone?

MP: It all depends on the situation. Some people prefer the anonymity of the phone and meeting in the in-office can be more in-depth because people are not distracted by other things. If you are on the phone or at home something else may be going on. We try to make it as individualized as possible. Whatever someone has a preference for they can access it that way.
The counselling program also has an education component and, incidentally, the various programs are all free. The education program includes sessions for people and families in the early stage, and for families in the middle and late stages of the disease. For the early stage we have ‘Where to Begin’, which is an introductory workshop, then we have ‘Middle of the Journey’, which deals with communication and procedural issues and then we have the late stage issues. We have about 8 different workshops in all that we offer in the afternoons and evenings.
We also run ‘Dine and Dance’, which is an annual event geared to people in the early stages of the disease and their family members. It is a beautiful event held at St Lawrence hall with a live band. Its focus is to provide Alzheimer’s sufferers and their families a safe place to socialize.

CM: Judging by the comments on your website it was very well received.

MP: Yes I think all of the programs are well received.

CM: This one is more fun though.

MP: Yes, it is a unique program and everyone has a good time. There is nothing else out there that is purely social. Many people say what is lacking is that there is no place for those with Alzheimer’s and their families just to have fun. Dine and Dance is also free, which makes a big difference for a lot of families, who would find it hard to afford anything like this otherwise.
Another element in our counseling program over the last couple of years involves research into the disease. We invite dementia researchers, who are currently doing research in Toronto. This allows researchers to get together with people who have the disease and talk about what is going on in research and it also provides opportunities, for an individual with Alzheimer’s and with an interest in research, to participate in a research program. It provides a way for them to directly meet researchers and get an idea of whether it would interest them to participate. We do these in the evenings about three times a year.
We also have a program called ‘First Link’, which is most easily described as a direct referral program. Health care professionals, such as social workers and nurses, who may come into contact with someone newly diagnosed or, who has been diagnosed for a number of years but has not been not linked to us or our services, can use this service with the permission of the individual and/or the family involved. They will pass the name on to us and within 24 hours we will give them a call and give them access to our services as well as other services in the community. We have over 50 referral sources.
The other project undertaken through the counseling program is the Dementia Diversity Project. We realized that we weren’t reaching all the diverse communities in Toronto and when we speak of diversity, we don’t mean just language or ethnic background but also, such groups as visually impaired, hearing impaired and the gay/lesbian community etc. We realized that they may not be accessing our services because they may be more comfortable in their own communities or that we couldn’t provide a lot of literature in Braille, or for the hearing impaired, perhaps we are unable to communicate in sign language. So, we went into the community and contacted the agencies already serving these groups and gave them dementia training so that they could then provide their families with information. However, we do not just provide education, we work with communities so that we can meet whatever the needs of that community are. For example, we did a lot of work with the Tamil community and went on outreach visits with Tamil social workers, did radio programs for them, and spoke at family education program workshops.

CM: Was this the program done in concert with the Providence Health Centre and their 24 Hour Alzheimer’s Program?

MP: Not with the 24 hour Program but through Jeysingh David, who is the Co-ordinator of the Tamil Care Network. It’s affiliated with Providence but not necessarily their Alzheimer’s care program, and that’s a project we’re quite pleased with.
We also run support groups and, our groups are unique, because we try to create groups that no-one else is running. So for example we have a Frontotemporal Support Group, a Lewy Body support group and a Vascular Dementia Support group. No one else is offering these. We also run the Early Onset Family Support Group for families caring for someone under the age of 65 and we have people traveling for over an hour to get to them.

CM: With the huge growth of the number of people with dementia, and I guess it is going to get worse with changing demographics, is it becoming difficult to find people to run these workshops?

MP: Well, all of ours are done by staff and finding people is not the problem.

CM: So the limitation is more the money?

MP: Exactly. Our staff our wonderful – they have great expertise. It would be wonderful if I could clone them and double the staff so we could do double the work. Some of the other chapters may be bigger than us geographically but, in a city like Toronto, we have a huge population to serve and, because the city is so congested, just traveling to, for example, Scarborough is difficult and time consuming. We’re a charity so any increase in funding or donations would be of great benefit.
Our Education Department comprises 2 public education coordinators, PECs as we call them, and they are the only positions in our chapter that are funded by the government. Everything else is done by donations and fundraising. Our PECs provide education to the general public as well as the professionals. They go out into the community and to other agencies to do staff training. Most recently they created a wonderful program for St John’ Ambulance for their pet therapy volunteers. They are gong to train them about dementia so they are more aware of it and know better how to cope. They also created a PSW education program.

CM: Yes, some of our PSWs went last year and we intend to do the same this year. They all thought it was very worthwhile.

MP: It can happen in two ways – the PECs can come to your office or you can come here. Also, I don’t know when they did it but, we have developed a third level, so some of them may not have done that piece. It’s another three hours for nine hours in total. Another program we are quite excited about is our Professional Forums Program and these are the only things that cover the cost. Our professional Forums are held three times a year and we have external speakers coming in. For example, two weeks ago we had a Communications Forum, which was held at the Faculty Club at U.of.T. We had Dr Orange speak on Communication as well as Marcia Zalev on Social Worker Communication. In March we are planning an all day Forum on Day to Day issues. We have a dentist coming in to talk about oral hygiene, an Occupational Therapist will discuss home safety and Researchers from the Marie Altzheimer’s Education Program will talk about eating and meal times. These programs are the only things we have to charge for.

CM: How much are they?

MP: $135.00, which includes breakfast and lunch.

CM: That seems very reasonable.

MP: Yes it is and we have wonderful speakers. We really take pride in the people we have coming in to speak. We hold them two or three times a year.
We also have a library, a resource center with probably one of the best selections of dementia related materials in the city. We have medical journals, books and videos available for people who want to do their own research and we have a full time librarian so that if you or any member of the general public want to do research, she is available to help them Monday to Friday 9 to 5. If we don’t have what you are looking for, we can point you in the right direction to find that material.
We are also affiliated with the Toronto Dementia Network web site, which provides a guide to all the Community Services available.

CM: Yes, that is a very useful service because you can find any type of service on it. Referring back to the Ball, do you see this as being related to Music Therapy?

MP: When you refer to music therapy there are benefits of music and then there is Music Therapy, which is a very specific type of therapy. When we do our social events, we just try to give people a break and allow them the opportunity to socialize and to enjoy themselves. One of the key messages that this Society tries to push is that despite dementia causing losses in some faculties, there are also remaining strengths such as a sense of humour and the ability to enjoy music. We try to create events where these things can be focused on. So, while we see the great benefits of music and encourage people to enjoy it, we do not offer Music Therapy per se, which requires specific training and certification. We have had Music Therapists come in to provide therapy in specific situations in the past. Many long term care facilities and other organizations now have Music Therapy on board. For an individual family it is very expensive to have music therapy and, it is not covered by any government programs but, there is the Canadian Association of Music Therapists, where people can find a therapist working in their community.

CM: Is there any plan to add other purely social events?

MP: Again, it is something that really depends on funding. We do, with our support groups, try to do social events that are specific to their purpose and especially around holidays we try to do something a bit more social.

CM: We haven’t yet discussed the Safely Home Program, which must by now be covering a large number of people.

MP: Yes, it now covers thousands and thousands of people; it’s not just a Toronto service, it’s a National program run out of the Canadian Alzheimer’s Society. It provides a way for families to ensure the safety of an individual. When people are registered they receive a bracelet that identifies them so that, if they get lost or wander, the police already have the data and can get them home. We do know that if someone gets lost, the probability of them being uninjured is low after twenty four hours have passed, so we really encourage families to register. They can down-load the application form from our web site.

CM: There seems to be some disagreement in the medical community about whether split care or shared care is a better way to treat patients. With respect to Alzheimer’s, does the Society have a position on this issue.

MP: No as a Society we don’t, but what we are very concerned about is ease of access to care. There are a lot of people, who may never have been diagnosed as having dementia or who have been diagnosed but receive no care, who are living alone. The other big issue is access to options. Even if it is better for someone to be cared for at home, the financial burden is huge so that a lot of people are prematurely placed in institutions because they can’t afford to pay for home care; that option just is not available to them. The ideal would of course be that as an individual I could choose either a long term care facility or stay at home, without incurring a financial penalty one way or the other.

CM: We briefly mentioned earlier the Providence 24 hour Alzheimer’s care facility. Are there others available and do you see this as the way of the future.

MP: I believe there are other twelve hour facilities and there are certainly people who benefit from the 24 hour program because they can’t sleep at night. But, again, the important thing is that people have access to the particular type of care they need. It makes a huge difference to have 24 hour care available, provided it is affordable! Like everything else, the financial side is a key factor in what can be done.

CM: Thank you Marija for a very informative interview and we wish you and the Society great success with all of your programs in the future.