Caring for people with Dementia
Isaiah 46:4 “Even to your old age I am he, and to grey hairs I will carry you. I have made, and I will bear; I will carry and will save.”
The Bible lays significant emphasis on caring for the elderly and those growing into their old age. Whilst technology has increased life expectancy and longevity, it has not quite achieved much success with preventing some of the struggles that come with old age.
Older people today face several challenges that emanate from a decline in their physical health, which then lead on to deteriorating mental health and limited social inclusion. Isolation therefore easily becomes a very common element in the lives of older people, thus increasing their vulnerability to risk and harm. From a safeguarding point of view, the Care Act, 2014 offers clear guidance on how to meet the needs of adults with care and support needs and even those at risk.
In this leaflet, the issue of Dementia is discussed and the implications for safeguarding adults with dementia is explored, considering what the church can do in treating individuals with dementia with respect, dignity and maintaining their human rights within a church setting.
Dementia is not a disease in itself but is a term that signifies a group of symptoms including memory loss, confusion, mood changes and difficulty with day-to-day tasks. It occurs when brain cells stop working properly thus impacting how you think, remember and communicate. The causes of dementia can be any of the following:
- Alzheimer’s – shrinking of parts of the brain.
- Vascular – reduced blood flow to the brain cells.
- Lewys bodies – abnormal aggregates of protein that develop inside nerve cells.
The types of Dementia are therefore also distinguished on the same basis: Alzheimer’s disease, vascular dementia and dementia with Lewys bodies. Livability, a national Christian disability charity has succinctly defined these types of dementia, (May 2016) as follows:
Alzheimer’s disease is the most common type of dementia. Problems with day-to-day memory are often noticed first, but other symptoms may include difficulties finding the right words, solving problems or making decisions.
Vascular dementia is caused by interruptions to the blood supply to the brain, sometimes as the result of strokes. Many people have difficulties with problem-solving or planning, thinking quickly and concentrating.
Dementia with Lewy bodies is a less common type. Early symptoms can include fluctuating alertness, difficulties with judging distances and hallucinations. Day-to-day memory is usually affected less than in early Alzheimer’s disease.
Frontotemporal dementia is another less common type, caused by damage to the front or sides of the brain. At first, changes in personality and behaviour may be the most obvious signs. Depending on where the damage is, the person may have difficulties with fluent speech or forget the meaning of words or objects.
If you know of someone who is worried about their memory, the GP should be the first point of contact to initiate the process of diagnosis and identifying support.
The ten forms of abuse that the Care Act, 2014 has identified (physical, sexual, psychological, financial, neglect, self-neglect, organisational, domestic abuse, modern slavery, discriminatory) are those which an individual with a diagnosis of dementia may be vulnerable to.
Whilst injuries may have a simple, innocent explanation, it is also important for those who support individuals with dementia (care workers, family members, church workers) to remain vigilant to the possibility of abuse and report any concerns to the Safeguarding Coordinator/Lead within the organisation. There have been growing reports by the Alzheimer’s Society (December 2011) that adults with dementia have been victims of financial abuse (through scams, miss-selling and cold calling) collectively losing tens of millions of pounds.
In situations where abuse is suspected, given that the individual’s mental capacity is limited and can be declining, it is important that those supporting the person take appropriate action by alerting Adult Social Care in the local area. The G.P. can also be contacted to alert them of the situation so that appropriate and measured action can be taken in respect to the individual. If you or anyone supporting an individual with dementia is concerned about the individual’s mental capacity to make informed decisions, it is best to contact Social Services to share the concerns and request for a mental capacity assessment. This is far more appropriate than taking action yourself and therefore potentially depriving the person of his/her liberty which may not be in their best interest.
One can seek support and advice from organisations such as Age Concern, Dementia UK, Livability, Alzheimer’s Society. The Alzheimer’s Society has a useful Dementia Connect facility on their website, which can assist you in exploring resources for people with dementia, local to their area.
In cases where you are aware that Adult Social Care is involved, seek to make contact with them and build positive relationships so that your church can be identified as a potential source of assistance within the Person Centred Support Plan for the individual. This will also facilitate easy access for you as an organisation, to their expertise and guidance on the safest and most appropriate manner to support the individual.
If you are concerned about the immediate safety of the person, we would advise you to contact emergency services. Most Local Authorities also have Adult Social Care – Out of Hours Teams who can be contacted for emergency advice, support and intervention.
What can you do to make your church dementia friendly?
Livability has developed the following guidance on the principles of developing dementia-friendly churches:
- Maintain a positive, optimistic but realistic outlook of what people with dementia can do. Consider doing things a bit differently to involve and incorporate their needs too.
- Offer sensitive and person-centred support. Make the person feel comfortable and supported.
- Listen attentively to the person when they are talking to you, (their non-verbal communication i.e. body language too). Even if what they say is not factually accurate, it is nonetheless important to them. Disagreeing with them may lead to them becoming more upset. But is important to recognise and try and understand how they feel about what they are saying.
- Support people with dementia to make choices and decisions. This may be difficult for them but there are several resources that are available to help this process.
- It is important to remember that people with dementia understand what is being said. Therefore be kind and supportive with your words and what is discussed in their presence.
- Support them to dress well. Just as looks are important to each one of us, the same goes to people with dementia.
- Think and act on ways that the creative skills of people with dementia can be used within the church. This will also help to facilitate their participation within the church, and help them feel like they belong. This includes worship as well. Livability and L’arche communities are excellent places to seek resources and help from in this area.
- The above organisations also offer practical advice and ideas on how to support dementia-friendly worship within churches.
Here are some useful websites and resources when dealing with the area of dementia: