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.

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