Naturally, ageing is associated with ‘slowing down’, including changes in memory and cognitive functioning caused by physical changes in the central nervous system and brain structure. It has been established that good health behaviours, mental exercises and targeted treatment of some organic brain syndromes can help older adults maintain their good cognitive health (Hoffnung et al. , 2010).
However, some degenerative brain diseases can cause dementia, particularly in older people, and with international shift towards an older population (Botsford, Clarke & Gibb, 2011), it is predicted that by 2040 there will be over 80 million people having some form of dementia, Alzheimer’s disease being the most common cause (“Predicting Alzheimer’s”, 2008; Hoffnung et al. , 2010). Although dementia mostly diagnosed in those over 65 years of age, younger people also get diagnosed with this degenerative condition, commonly described as ‘younger onset dementia’ (“Exploring the Needs of Younger People with Dementia in Australia”, 2007).
Symptoms of dementia include impaired orientation, intellect, memory and judgement, and as sufferers experience confusion, delusions, changes in behaviour and personality, they lose independence and require more and more care and controlled environments to keep them safe (Hoffnung et al. , 2010). While the loss of independence and gradual cognitive loss is obviously causing anguish to the patient, dementia also leads to profound changes for those around them (Botsford et al. , 2011).
Burden of providing care for an aged person, for example, would often be carried by the spouse or by adult children (Hoffnung et al. , 2010). Providing care involves physical and emotional effort, and sometimes significant financial commitment, as the paid employment may have to be forgone by the caregiver. Perhaps spouses experience the most significant impact of dementia diagnosis, best described by a spouse saying how heartbreaking it is to know that you are “gradually losing your best friend” (“Predicting Alzheimer’s”, 2008).
It is logical to suggest that the combination of caregivers’ experiences of grief, isolation, life stressors, restricted freedom and other issues (Hoffnung et al. , 2010) may lead to caregiver depression with nearly half of the caregivers being at risk for clinical depression, and with spouses, compared with nonspouses, being significantly more depressed (Schulz et al. , 2004). Institutionalised care facilities for dementia sufferers, subsidized by the Government, may provide some relief for the families, but they do not remove emotional issues that relatives face.
Schulz et al. (2004) found that after institutionalising their loved one, relatives did not get relief from depressive symptoms and anxiety and that spouses had higher levels of depression and more anxiety after than their nonspouse counterparts. On the positive side, the benefits of caregiving, particularly by adult children, may include experiencing personal growth (Hoffnung et al. , 2010), and providing help to the relative can make one feel more useful, needed, appreciated, and important (Schulz et al. , 2004) Botsford et al. 2011) have researched the effects of dementia on partners in the context of ethnic minorities and their cultural diversity and such approach has identified that ethnic background appears to influence how people engage with diagnostic and support services and the way they organize care.
For example, research identified that black Caribbean people, being conscious about maintaining autonomy and not wanting to be regarded as ‘crazy’, may present to dementia services too late or not at all, thus prompting the authors to highlight the importance of promotion of dementia awareness in specific ethnic communities (Botsford et al. 2011). Report “Exploring the Needs of Younger People with Dementia in Australia” (2007) outlines a number of additional issues specific for younger people with dementia and their families, including difficulty in diagnosis, effects on family responsibilities while still raising children, working and significant financial commitments, life plans, social and sexual implications and difficulty in accessing appropriate services, as such services are not normally designed for access by younger people.