(An article from the Focus – OTASA Newsletter, by Charlene Richards – Occupational Therapist)
Working in the field of geriatrics soon shows you that one of the most traumatic events an elderly person can go through, is moving to an aged care home. Often this is firstly not even the decision of the person being moved, and secondly, a very last resort – when there are really no other options left. Ask any older individual and they will tell you that that one of their greatest fears is ending up in a little, dark and depressing room with few if any of your own belongings surrounding you, having to do “silly” activities in which you were never previously interested, or that look like “children’s games” and with strangers in uniforms taking care of you in the most intimate ways. If you speak to family members/spouses who have had to make the decision to put a person in a care home, you will understand that this was one of the hardest decisions they have ever had to make, that they searched extensively to find the right place, that they still possibly aren’t satisfied with the choice they finally made and that they feel guilty about their decision every day and even more so when they go and visit their loved one.
Why is this such a traumatic event? Why are many care homes perceived as a depressing place where people go to die, rather than as ‘home’, for the last few years of their lives? Can this be different? And if so, how? And are there some guidelines that can help us when choosing a care home for ourselves or our loved ones?
The reality of institutionalisation* within our care homes is a big challenge and possibly the biggest contributing factor to the way that we perceive these homes. As soon an elderly individual moves to a care home, they take on the role as “patient” and seem to lose their role as spouse, parent, friend, homemaker etc. They will soon become helpless and unwilling and/or unmotivated to try and maintain their independence for as long as possible. According to Bettelheim (Bettelheim in Barton, 1976), the causes of institutionalisation are:
- Loss of contact with the outside world (in many care homes, the residents are not even aware of the date and there are not enough opportunities to hear about current events or just to experience every-day activities that used to form a part of their world and reality).
- Enforced idleness (there are still a lot of homes who do not offer a stimulation/therapeutic programme or the programme does not consist of meaningful activities suited for the individuals who participate, which makes them lose interest).
- Authoritarian medical and nursing staff (without realising this, many of the care or nursing staff take on the role of a “parent” or “boss” when they give the individual limited or no choices and responsibilities. This is often done with good intentions – carers try to avoid risks and wanting to give the best possible medical care and this often leads to no room for freedom, creativity and spontaneity. The individual will feel helpless and takes on the role of a submissive patient).
- Loss of personal friends, possessions and personal events (when moving to a care home, the person will have to give up a lot of important parts of his/her life. One is close friends and/or family members. Before moving to a care home, the individual would have formed part of a community where they had friends and companions who they valued. After a big move, which can often be far away from their community, they will not be able to spend time with several of these friends/companions. It might be because the friends are old and frail themselves, but the fear of “institutionalised care homes” will also prevent them from visiting regularly. The person might have had a dog/cat that was a loving companion for many years, which will not be able to join them in the care home. Family visits might also dry up as they feel apprehensive about the new environment – especially younger children. Most of the care homes do not allow/encourage many personal belongings being brought in when the individual moves in, which means that they often move into a completely new environment without any personal belongings which if allowed, would make them feel at home. Their calendar of previously enjoyed activities, is also left behind when they move into a care home – nobody knows they like to play bridge on Fridays or that they used to go shopping on a Tuesday morning.)
- Medication (as individuals get older and they experience more and more health issues, they are at risk for poly-pharmacy where they often end up taking five or more regular medications, sometimes prescribed by various doctors. Not only can the use of these different medications mean a reduced effectiveness of important drugs, but the many side-effects of these drugs can have a big impact on a person’s functioning and well-being, with an increased risk of falls)
- Ward atmosphere (even the word “ward” contributes to the “hospital-like” atmosphere that is in a lot of care homes. Terms like “sister”, “nurses”, “patients” etc. make it sound like a hospital and not a home. Even terms like “activity centre” can have a negative connotation and we need to carefully consider the terms that are most congruent with what you would use at home. Aspects such as Hygiene are obviously important in a care home, but even some of the cleaning products and methods of cleaning can contribute to an institutionalised atmosphere. A strict routine, with no opportunity for choices or decisions is one of the biggest contributing factors to the atmosphere associated with institutionalisation).
- Loss of prospects outside of the care home**: (When a person moves to a care home, it often seems they have to leave their purpose and dreams behind. They get treated as someone who is just part of the crowd, with nothing that makes them worth more or of value. There is no encouragement or freedom for them to still have a purpose and to have dreams they want to still make true).
If we look at institutionalisation and realise the impact it has on elder individuals and how limiting and dehumanising it is, there is no doubt that a change is needed. This change is described in the work of Tom Kitwood on Person Centred Care (PCC). His work focused mostly on persons living with dementia, but the principles are applicable to any elderly person who needs to move to a care home because of physical/mental/circumstantial difficulties. This shift in the “culture” of care, or “culture change” as described by The Eden Alternative® (a philosophy aimed towards the deinstitutionalisation of care homes), is the answer to the question of whether it can be different.
PCC is founded on the ethic that all human beings are of absolute value and worth, no matter what their disability. Central to PCC is the principle that an individual’s life experience, unique personality and network of relationships should be valued and taken into account by staff in care settings.
According to a KPMG survey report done in May 2013, this means that the focus of the care should be on the individual’s needs, rather on the organisational structures and procedures of the care home. The emphasis should be placed on outcomes, rather than on activities and careful attention should be paid to every individual’s dignity, human rights and autonomy.
The report also mentions a study done by a UK teaching hospital (Sheffield Hallam), which developed a Senses Framework for long term care that looks at the needs of both the care receiver and giver, based on six key senses (see figure below).
This goes hand in hand with the 10 Principles of The Eden Alternative® that can guide care homes when implementing person-centred care (see figure below).
(To read more about these principles and their application, go to the Eden Alternative South Africa’s website: http://gapdesign.co.za/hosting/eden-alt/)
The most important of the above mentioned principles is the fighting against the three plagues of loneliness, helplessness and boredom in elderly care, and creating a human habitat where life revolves around close and continuing contact with plants, animals and children.
This will promote a pathway to break down institutionalisation in care homes, increase quality of life of elderly individuals and to use Eden terminology, promote “a life worth living”. It will change the perception that individuals come to a care home to die and change it to a journey to a new home where they can live the golden years of their lives with quality.
Here are a few guidelines/questions that can help you when involved in a person’s move to a care home, as adjusted from Bupa Aged Care’s booklet: “Choosing a care home: Seven signposts on person-centred care.”
- Is the home welcoming and inviting? (a welcoming home will have no set visiting hours; staff will be friendly; there will be a homely feel and a pleasant smell; the process of moving in will be supported by staff and other residents and staff will work together to make new residents feel welcome).
- What is the atmosphere like? (a person-centred home will have some forms/systems in place that focus on getting to know the individual before they move in; the routine in the home will be as flexible as possible; there will be lots of opportunities for choices/decisions for instance in the menu/during meals or whether or not to participate in activities available, bathing times etc.; noise levels are comfortable, possibly with soft music/radio in the background if preferred by residents).
- How much engagement and activity is visible? (a range of activities are available that relate to residents’ personal interests; celebration of special events is important to the home e.g. birthdays, passing of residents is being honoured; individual and group activities are meaningful and people show genuine interest in them).
- How is the interaction between residents, families and staff? (staff care for the same residents every day; residents are always treated with respect and dignity; staff are available to talk to family at any time necessary; staff know and call individuals by preferred names and know special information about them that makes care more person-centred).
- Are people known as individuals and are their rooms respected as their home? (staff know residents backgrounds, likes and dislikes, preferred routines, simple pleasures and interests as well as their wishes for the future; residents are encouraged to personalise their rooms and their privacy is respected).
- How easy/difficult is it to get around the care home environment? (the home has a space/s that are supportive of people living with dementia; there are lots of garden areas that are safe, accessible and enjoyable; there is good signage all around that is not “hospital-like” in nature; the home is accessible to all levels of mobility).
- Does the care home promote a sense of community? (visitors are welcomed/encouraged to be close by when residents are ill/feeling lonely or depressed; family and friends are encouraged to visit as often as possible; there are play areas for children, games and activities that families can do together; and animals as companions are all part of this community; the home assists residents to go on outings where possible; volunteers are welcomed to further support residents; there is a general sense of community and belonging.)
Even though there are major changes and development in care homes in South Africa, with a “culture change” movement started by GERATEC (a company that prides themselves on excellence in person-centred care), alongside with Eden Alternative South Africa, there is still a long way to go, before the bulk of the care homes will adhere to person-centred care principles. There is also a risk of the term “person-centred care” becoming meaningless with care homes promoting themselves as being person-centred, when they are not willing to put in the time and effort to bring the much needed “culture change”. A whole organisation has to form part of this change and it goes along with a lot of training and many changes, big and small, in and around the home.
We can work together to bring change and to make sure that things are different by the time the next generation or maybe your generation needs a care home. That elderly individuals can experience this next step in their lives as a journey and not as a “death sentence”, that they can still have a piece of home – even when they need to leave behind their familiar environment and that they can always be encouraged to keep on dreaming – this is why care culture needs to change.
“Our dream in childhood has found its way to fulfilment without us knowing they become reality. Old age is its camouflage.” – Leah Dancel.
*For the purpose of this article the term institutionalisation refers to the long-term care of elderly individuals in care homes. Tessa Durham suggests that frustration in institutional care develops as a result of adherence to the medical model. (Durham in Creek, 1990) Thus a person is seen as his/her diagnosis and treatment, instead of being seen as an individual.
**Changed wording from “hospital” to “care home” for the purpose of this article.
 Crouch, R, Alers, V, (2005) Occupational Therapy in Psychiatry and Mental Health: England, Whurr Publishers Ltd.
Epp, T.D, (2003) Person-centered Dementia Care: A Vision to be Refined, The Canadian Alzheimer’s Disease Review, April 2003.
KPMG Survey Report, (2013), Deliver Person Centered Care.http://www.kpmg.com/global/en/issuesandinsights/articlespublications/an-uncertain-age/pages/deliver-person-centered-care.aspx
Bupa Aged Care’s booklet: Choosing a care home: Seven signposts on person-centered care.http://bupaagedcare.com.au/staticfiles/BupaCare/Images/choosing%20a%20care%20home/choosing-a-care-home.pdf