Could it be dementia?
‘My mother has become very vague and forgetful,’ said my colleague Janet, ‘and I’m thinking – could it be dementia? But I’m also wondering if it may be anaemia. She can’t always be bothered to cook for herself, or eat properly. So I’ll take her to the doctor, and ask him to run some checks.’ As a former care home manager and psychogeriatric nurse Janet knew that dementia is an umbrella term for a variety of conditions that affect memory and thinking, and that some of the causes, such as anaemia and vitamin deficiencies, can be treated. Other reversible causes include an underactive thyroid, a urinary infection, a reaction to some prescription drugs (including Statins), or emotional problems, for example stress, anxiety, or depression. There is also a condition in the elderly known as Mild Cognitive Impairment, which can be due to physical frailty or cardiovascular insufficiency. In this case the tests showed that Janet’s mum was anaemic and, after treatment, she returned to her normal self.
It would have been a different situation altogether if Janet’s mother not been anaemic. Her GP, who knew them both well, would have asked Janet to keep an eye on her and bring her back if there were other developments. Then he would have referred her to a doctor specialising in dementia who might have diagnosed Alzheimer’s disease or Vascular dementia, or a combination of both. It is important that a diagnosis is made by a specialist with clinical training.
People react in many different ways to a diagnosis of dementia. For the patient there can be a sense of relief, because there is now an explanation for the strange things that have been happening. There may also be grief, sorrow and anger for the loss of the future. It is a time for taking hold of the spiritual truths that have been central to our lives, for example, reminding ourselves that ‘The Lord Himself goes before you, and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged’ (Deut. 31:8).
The scriptures also say, ‘As the mountains surround Jerusalem, so the Lord surrounds His people from this time forth and forever’ (Ps. 125:2). And like Ezekiel’s ‘wheels within wheels’, most of us have circles of support in our lives – our church, our friends, our family and our work colleagues. When dementia enters our lives two more will be added; one for medical professionals and another for Social Services. We will need to be sure that they are firmly in place for us, and, if appropriate, working together.
The Lord and his people
Now, more than any other time perhaps, we need spiritual support and encouragement. If you have been diagnosed with dementia yourself, you will need empathy and understanding. If you are caring for someone with dementia you need to know that it can be a very isolating experience. It’s good to know that you won’t be ‘out of sight, out of mind’ when you can’t get to church, and that you will be prayed for. Hopefully, there will be someone who can befriend you, visiting with church news and noting special prayer requests. Often, church members want to help but don’t really know what to do, but church support can make such a difference. A participant at one of our conferences told me that the leader of his local council was so impressed with the support his family had received from his mother’s church when she had dementia that he recommended to his Social Services that they include their local churches in their programme whenever they could.
Even if you’re not used to it, do accept offers of practical help. But most of all you need be reminded that we are all pilgrims on a journey, just passing through here, and that the best is yet to be for both you and your loved one.
Family and friends
It’s best to involve family members as soon as possible. Discuss the future with them, and ways in which they can help. Encourage them not to become distant, or at worst, totally absent. Dementia can cause strains and splits within a family. A daughter from a large family told me how her siblings stayed away, and didn’t respond to her emails. When she called them they said they didn’t know how to cope with their mother who seemed to have become a different person. But if the circumstances are discussed at the outset and everyone knows what to expect it can help ease the way.
There’s a saying that you can’t choose your family but you can choose your friends. Friends can bring ‘outside’ news, and help you not to become isolated. They can give emotional support and understanding, and continued contact will assure us that while the disease may be changing our lives, it is not changing us. Friends bring empathy. Grief is one of the strongest emotions associated with caring for a relative with dementia, and friends can listen and understand.
Social Services and medical professionals
Hopefully, your doctor will give you a clear explanation of the disease, and an idea of what to expect as it progresses. He may be able to prescribe medication that will help, and direct you to other sources of help, including accessing specialist advice when there are changes or issues you are concerned about. Help from GPs seems to be varied. At an Alzheimer’s group meeting I attended several months ago a researcher for the Welsh Assembly Government asked participants what they were lacking that they felt would help. A wife caregiver asked how she could get better advice from her GP, who seemed to retreat into phrases about ‘patient confidentiality’ when she asked what was happening with her husband now his behaviour had changed and how to cope with it. Why didn’t the government insist that GPs were more helpful? The researcher explained that GPs’ medical practices were in fact private firms contracted to the government, but not managed by it. Some people seem to have very helpful doctors, and others do not. A former social worker told me of her horror and anger at discovering that her GP had discovered her husband had dementia from head scans he had had done for another issue a whole year before his behaviour began to change, but didn’t tell her husband or her until the dementia was well advanced.
Your social worker can tell you what support is available and how to obtain it. Although it is still a bit of a post-code lottery, support seems to be more available now than it was a few years ago. A wife told me recently that she and her husband had carers who called in four times a day. It meant she could go shopping and get on with her life, while he received their attention. Carers provide respite, in small bites.
Louise Morse is a cognitive behavioural therapist with a Masters’ degree in the effects of caring for people with dementia. She is author of books on dementia and works for Pilgrims’ Friend Society.