Boston Beautiful

Alzheimer Care in Boston

by Jenny Garratt

It’s been an interesting week in Boston. I decided to rent a car as my visits were so dispersed that public transport didn’t seem to be a viable option.  Having never driven outside of the UK, by the time I reached the rental desk at the airport I was decidedly nervous. After navigating through what is apparently one of the worst cities in the US to drive around I was relieved to finally reach my accommodation with only a minor curb bump! However, the excitement of my first day in Boston wasn’t over yet. After unpacking I came downstairs to find my hostess had left the house without giving me the code to the front door, effectively locking me in. Before you imagine my annoyance, let me first describe her... A single mum with triplet 8 year old boys (I repeat, TRIPLETS) who has a full time job, hosts 4 guests through airbnb, writes books in her spare time and is about to start a PhD. When she got back a few hours later I decided to let the front door situation go. She had enough on her plate.

My primary contact for the week was Hearthstone Alzheimer Care who kindly organised my entire Boston itinerary and even contacted other groups for me to visit. The Hearthstone approach aims to create a life worth living by enriching lives and offering hope. Support and care focuses on creating meaningful, positive and fulfilling experiences through the effective use of programming and environments that support independence and choice. Alongside their six facilities, Hearthstone also offers education for other organisations and initiates research into non-pharmacological interventions. They are closely linked to the I’m Still Here Foundation, which aims to develop and evaluate innovative non-pharmacological approaches for people with cognitive challenges and also creates and implements inclusive, community-based arts and culture programming.

My first morning was spent observing an Artists for Alzheimer’s (ARTZ) programme. ARTZ is one of the initiatives developed and maintained by the I’m Still Here Foundation and is made up of a collaboration of artists and cultural institutions which aim to educate and inspire individuals with memory problems, their care givers, family members and friends. The day’s programme was part of the Meet Me at the Museum initiative and involved an interactive tour around Harvard's Peabody Museum of Ethnology & Archaeology. It’s a free weekly program and each event is facilitated by trained ARTZ staff. Today’s group was split into two and facilitated by Dee Brenner, Programme Co-ordinator, and Dr Christina Smiraglia. The sessions were very engaging and aimed to have a ‘fail-free’ approach, encouraging interaction with the exhibits through questions such as “how does this make you feel?” rather than focusing on factual content. Afterwards, I headed to the Hearthstone office to participate in an awareness session for organisations thinking about bringing groups to ARTZ sessions. It was very informal and questions were encouraged, of which I had many! Content included practicalities of what happens throughout the session, understanding person centred approaches and tip sheets for accompanying care partners, who don’t get a formal training session, called “Tips for a Successful Museum Tour”.

On Wednesday I spent the entire day with Learning for Life, which is an educational programme specifically designed for individuals with dementia that uses Montessori methodology and the I’m Still Here approach. Learners select their own subjects to add to the curriculum and are supported to engage in creative activities, cultural experiences and cognitive stimulation throughout the day. The basic daily framework of the curriculum is constant but the context is continuously created, giving opportunities for novelty and new learning in a safe environment. The day started with a famous event in history that happened on the day’s date and then a photo of the day to discuss. There was then individual study options for the rest of the morning, including the life story corner (today's question is where do you go to feel inspired), reading centre (article of the day that is discussed, today's is about the life of Victor Hugo), art centre (draw a place that inspires you) and the cooking centre (today is making chocolate chip biscuits). There are clear signs for each activity and it was nice to see lots of choice, giving learners the opportunity to move between them if they finish or get bored of one.

Sean Caulfield and Dr John Zeisel

After going out with the learners for lunch, the afternoon was then spent discussing the article on Victor Hugo. Throughout the article there are questions for participants such as Guernsey was a place of inspiration for Hugo, where do you feel inspired? All questions aimed to promote engagement from the learners without the stress and frustration of focusing on specific facts that would need to be recalled. The discussion was extremely interesting and allowing leaners to choose the content of their curriculum ensures that they are always talking about topics that are both relevant and interesting to them. 

I had the pleasure of meeting  Dr John Zeisel at the Hearthstone Office, president and co-founder of Hearthstone Alzheimer Care, who took me out for dinner. One of the key points I took away from this meeting was an emphasis on transformation. Both Hearthstone and the I’m Still Here Foundation aim to transform the way that people think about dementia, not only through training but also through research. The use of creativity and artistic skills are integral to this transformation at a community level, helping to develop the mentality needed to act as a catalyst for change.

The morning of my third day was spent visiting Melody Bushmich, Early Stage Programme Coordinator for the Alzheimer’s Association, who gave me lots of information about upcoming programmes. It was interesting to see yet another organisation moving individuals from the traditional role as receiver of support towards playing a more active part in service provision. This reminded me of the Brooklyn Public Library and their transition from giving stories to teaching people to capture their own. The Alzheimer’s Association offer lots of services including care consultation programmes, legal and financial services, support groups and training. However, what really interested me were the new programmes currently in development for those with early stage dementia. The aim of one of the new programmes, an intensive course lasting 4 weeks, is to provide individuals with education, support groups and training on how to engage with other groups through volunteer opportunities. The programme aims be a launching platform from which people with dementia can become advocates for the Association and active volunteers within their own community. There is also a peer to peer element to link individuals with others that are experiencing the same thing, not for professional advice as such but more for support, understanding and friendship.

My next call of the day was Goddard House, an assisted living complex that also has a memory support facility attached to it called Olmsted Place. It was in Olmstead that I observed an excellent music therapy group session facilitated by Angela Schroedar-Dill. 

From the outset the use of names on an extremely regular basis solicited a positive reaction and ensured all residents were continuously engaged, felt welcome and included. Song choice was clearly important, with the theme for the day being hopes and dreams, and the songs were interspersed with questions like ‘what would you wish for if you threw a penny into a fountain’? After the session I met with Ginny Mazur, the Community Partnership Director, and Cindy Allard, the Programme Director. 

There was a clear emphasis on staff engagement and the promotion of continuous learning for all. Cindy explained that each staff member was very unique, with different passions and skills that they were encouraged to share. One staff designed jewellery, another played the flute and another was interested in technology. Ginny and Cindy aimed to encourage staff to use their interests and skills to provide the residents (and other staff members!) with new learning opportunities.

Day Programme at Hearthstone

On my last day with Hearthstone I visited one of their own sites in Woburn to meet with Stephanie Faulkner, Program Director. A huge amount of thought had gone in to the individual programming on offer, with so many activities and experiences available that it was impossible for someone to do everything! There were multiple programmes every hour, in stark contrast to the one activity in the morning and one in the afternoon schedule that you often see in other care facilities. It was a truly excellent example of how much really can be offered with the right attitude and training. The use of parallel programming, where individuals have choices that are tailored to their varying abilities, also ensured that all residents participating in experiences were being set up to succeed. The notion of ‘failure-free’ programming is essential when trying to avoid feelings of frustration that can occur when given challenging tasks that may lead to failure. Wording is also extremely important, with the different levels being called discovery, vitality and serenity. 

Resident companions, or care workers as they are known elsewhere, also do programming and there is a real emphasis on having a team approach, all working towards the common aim of giving residents excellent care, support and a life worth living. What I also found interesting was seeing improvisation skills acknowledged as a key component in the successful facilitation of resident experiences, a theme that has been touched on in other visits throughout my travels. Stephanie’s background in drama helps her continue the flow of conversation with residents in a natural, carefree way. Threading is the term used to describe the method of connecting conversation and topics together, a key component in good improvisation. 

My time with Hearthstone has been extremely inspirational and has helped highlight the difference between good person-centred care and great person-centred care.