Dementia: Managing loss and addressing stigma in the journey to residential care: Part 2

I’ve been talking about managing loss and the transition into residential care for people with dementia, and how we can support their journeys.  I wanted to now talk about dementia friendly communities such as those funded by the Life Changes Trust.

Dementia Friendly Communities are first and foremost about inclusion.  For example, the Trust funded an allotment and community garden project in West Dunbartonshire, which offers a safe place for those affected by dementia to socialise and work alongside other people in the community.

By providing opportunities for people to contribute and volunteer within the allotments, the projects are continually providing ways to break down preconceptions and beliefs that many people hold about people affected by dementia. This allotment is also attended by members of the local care home, who thrive in the environment of the outdoors, where they can participate in gardening and growing fruit and vegetables.

Sporting Memories groups are another example of a Life Changes Trust supported project that helps to break down societal stigma and discrimination. The programme is run across Scotland and helps to promote both the physical and mental well-being of people affected by dementia. By meeting both in public and sporting venues, as well as holding meetings in care homes themselves, this helps to break down any negative attitudes towards people with dementia by showcasing that individuals are still perfectly capable of socialising and having fun with others.

 

Expanding into care homes also helps to ensure that residential care doesn’t limit or exclude anyone from continuing to participate in social activities and groups that they enjoy, while also providing other residents with the opportunity to attend as well, who may not be as able to commit to any external activities. This avoids both discrimination and exclusion of anyone who wants to attend, by ‘bringing the group to them’ and not depending on staff or family availability to accompany the person if needed.

Priority one of the Life Changes Trust is to enable people affected by dementia to live in a place that suits them and their needs. In a residential setting, talking to the individual about what they need and want for a good quality of life, what is still possible for them to achieve and encouraging them to redefine their goals will help them to discover new ways in which to enjoy themselves and highlight activities for them to look forward to.

The second priority of the Life Changes Trust is to protect and promote the independence of people affected by dementia. Maintaining and promoting the confidence of people is crucial to encouraging them to remain as independent in residential care as they can, minimising the risks of loneliness and boredom. A continuing sense of self throughout the transition into residential care can help to promote and maintain an individual’s confidence and dignity.

The third priority of the Trust is to support work that will guarantee that people affected by dementia get the help they need, when they need it. Providing choices and opportunities for people to voice their preferences and opinions, allows an individual to maintain a level of individuality, promoting their dignity and independence. Staff who adhere to these principles work with people affected by dementia in a person-centred manner.

Priority 4 of the Life Changes Trust is to create a culture in Scotland where people affected by dementia feel safe, listened to, valued and respected. Maintaining pride, resilience and a fighting spirit are crucial for an individual affected by dementia to feel involved and valued both as a person and as a resident.

The fifth priority of the Trust is to empower people affected by dementia to do the things that are important to them.  Taking the time to learn about a person’s life and what roles are important to them, can allow a care home to facilitate the continuation of some of these roles and maintain their pride, dignity and purpose.

The transition into residential care is a massive adjustment for everyone, including the care home staff. In order to deliver personalised and person-centred care, staff need to take the time to get to know the person, discovering their likes and dislikes, what motivates them and what they enjoy. Well planned therapeutic activities that reflect the person’s interests can be a good way to build up relationships. Taking the time to plan something for a new resident can make them feel listened to and valued, while simultaneously involving them in activities, and help them to settle in and readjust.

Keeping people active and engaged with a range of different activities is vital to preserve a person’s cognitive and social abilities. Interactive activities with visitors to the care home is a great way to get people involved, make new friends and maintain old relationships with friends and family outside of the care home. Creative arts, music, cooking and baking workshops are all examples of ways in which care homes can provide fun and interactive ways for residents to preserve their skills while enjoying themselves at the same time.

Resident-led timetables and classes will ensure that people are offered a choice and an opportunity to voice their preferences, for example allowing them to choose the times and days of the classes, along with what they would like to do within the sessions. This provides the best possible chance that people will enjoy and attend the sessions as it is catered for their preferences, whilst maintaining their sense of dignity, independence and remaining person centred.

 

Being made to feel like your opinion matters makes a person feel valued, respected and involved, all resilience building qualities that can help to improve a person’s experience of residential care and improve their quality of life.

But there is still work to be done.

A report by the Alzheimer’s Society in 2007 found that the biggest areas in need of work are the provision of activities and occupation, treating residents with dementia with dignity and respect, and the relationships between care home and relatives/friends.

And almost a quarter of those asked were unhappy with the level of their involvement in decision making about the care of their relative and over a quarter of carers felt that they did not receive enough information and updates about the care and treatment of the person they cared for.

These findings clearly show the gap between good quality practice and meeting the needs and desires of those affected by dementia, giving a focus for continuing work around improving the experiences of the transition into care for individuals and their families.

Recently, the Life Changes Trust invested £135,000 to ensure that the rights of people living with dementia in care homes are recognised and respected. Care homes across Scotland will benefit from the funding, and will use it to support the inclusion and participation of residents with dementia in a meaningful way, so that residents have a genuine say in their own day to day lives.  This will hopefully provide a precedent for future practice within care homes, transforming how people with dementia experience the transition into a residential setting.

 

Within this blog, I have tried to highlighted some of the current issues and areas for improvement facing people affected by dementia and their transition into residential care. All of the projects funded by the Life Changes Trust are undertaking transformational work with people affected by dementia all across Scotland. Dementia is not the end of someone’s life, it is merely the beginning of a different, and hopefully a more supported one.

Dementia: Managing loss and addressing stigma in the journey to residential care

Over 90,000 people in Scotland are estimated to be living with dementia, and between 2006 and 2016, the number of adults with dementia in residential care increased by around 30%.

The transition into residential care can affect more than the individual with dementia, as most people have friends and/or family around them that will also have to readjust to their move. Carers can find themselves with a smaller role and less responsibilities for the individual and so can also struggle with the readjustment of the transition.

Such a significant change in a person’s life results in many losses, such as the loss of one’s home, daily routine and freedom (to some extent). Loss of identity is also a big issue for people living with dementia in residential care homes – to go from being a homeowner, a wife or husband, to a care home resident is a massive shift in self-identity.

There are also many stigmas associated with a diagnosis of dementia, such as dementia being the ‘end’ of someone’s life (either literally or socially) or that those with dementia in residential care are there because they are ‘hard to manage’. Carers, friends and family are also sometimes unfairly stigmatised as having ‘given up on the person’ and having ‘got rid of them to a care home’.

There is also a lack of understanding around the impact and causes of some of the more inconspicuous or ‘unresolved’ losses involved with a move to a care home which can affect both individuals with dementia and their carers.

Kenneth Doka, a Professor of Gerontology, first introduced the concept of ‘disenfranchised grief’ in 1989. He defined it as ‘grief that is experienced when a loss cannot be openly acknowledged, socially sanctioned, or publicly mourned’. Put simply, disenfranchised grief isn’t automatically recognised and doesn’t hold the obvious need for mourning, such as the death of a loved one. For example, losing one’s identity after living with family for a large part of your life can trigger grief that can often go unrecognised or belittled, leading to unresolved, disenfranchised grief, which in turn can lead to a vast array of problems, such as a decline in mental health or the onset of depression.

For a spouse who may have been caring for their partner for years, the sudden loss of responsibility and their caring role can be a massive shock. Not only will their daily routine change, but the absence of the person will be significantly notable.

Pauline Boss from the University of Minnesota describes this experience as someone being ‘psychologically present but physically absent’.

Another threat to the well-being of individuals with dementia and their families is the risk of entering ‘anticipatory grief’.  Clinical Psychologist Therese Rando believes that this can form from an individual accumulating all of their previous related losses, developing a negative attitude towards the future, and focusing mainly upon all of the losses yet to come. For example, a person living with dementia who is transitioning into residential care might think of all of their previous losses – their decline in cognitive ability, their potential reduction of social freedom – and so begin to think mainly of further future losses. For a person about to enter residential care, they may easily presume that this means the imminent loss of their freedom, dignity and social life.

Another factor that can increase the risk of disenfranchised grief is the sudden exposure to the deaths of other residents. While individuals are likely to have experienced the death of one or two people outside of residential care, their exposure to death will suddenly increase. This may inhibit individuals from being able to acknowledge and respond appropriately to each loss.  Care staff are more likely ‘to be used to’ dealing with the death of residents, but for a new resident this can be overwhelming and scary.

So what can we do to ensure the general and mental well-being of all individuals transitioning into residential care, as well as that of their friends and family?

The Life Changes Trust has 5 main priorities relating to their dementia programme, based on what people with dementia and carers told them was important to them. They provide a solid base to begin to answer the above question. They are:

  • I live in a place that suits me and my needs
  • I am able to be as independent as possible
  • I get the help I need when I need it
  • I feel safe, listened to, valued and respected
  • I am empowered to do the things that are important to me

Another of the Trust’s areas of work is challenging societal stigmas and negative discourses surrounding people affected by dementia. One of the best ways to break down barriers and stigmas of those affected by dementia is by finding ways in which they can continue to play a role and have a visible presence in local communities and projects.

By integrating those affected by dementia with the general population, we can begin to challenge any preconceptions that people may hold, such as the belief that those with dementia are unable to function independently anymore, or are unable to continue with everyday life and activities despite their diagnosis.

Dementia friendly communities such as those funded by the Life Changes Trust, allow a safe place for those affected by dementia to socialise and work alongside other people in the community.

They also continually provide ways to break down preconceptions and beliefs that many people hold about people affected by dementia, both in and out of care settings.

I’ll talk in more detail about the Life Changes Trust funding for dementia friendly communities in part two of this blog.